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CONTENTS
July 2016
VOLUME 27 NUMBER 274
life beyond wheels
F E AT U R E S
14 UNIQUE GETAWAYS
What is typically American? Here are three examples
of Americana, each with its own unique character and landscape. BY STEVE WRIGHT
19 CHINA SCI TRIALS EXCEED EXPECTATIONS Wise Young has been seeking ways to overcome paralysis for decades. IAN RUDER interviews him about his latest results.
37 LEARNING TO SAY YES
Transitioning from life-altering injury is difficult, but
finding a pathway to growth can lead to success. BY STEVE DALTON
C O V ECANNABIS
R S TO R YSTEW: STIRRING THE POT 24
Twenty-five states now have some kind of medical marijuana program, four have legalized recreational marijuana, and tax revenue from pot products is certain to lure more states into recreational
expansion. The old hippie vision of “if it feels good, do it” has taken America
by the purse strings. But will medical use grow or wither from the
competition? MARK BRAUNSTEIN AND IAN RUDER report.
Cover Photo by Matt Wong
Contents Photo by Monique Chevalier
D E PA R T M E N T S
4
6
8
10
12
BULLY PULPIT
LETTERS
NEWS
EVERYDAY ADVOCACY
SCI LIFE
13 EAT WELL, LIVE WELL
35 UNITED SPINAL NEWS
42 INNOVATIONS
44 RAISING A RUCKUS
48 CRIP BUZZ
BULLY PULPIT
life beyond wheels
JULY 2016
NEW MOBILITY IS THE
MONTHLY MAGAZINE OF
PRESIDENT & CEO: JAMES WEISMAN
VICE PRESIDENT OF PUBLICATIONS:
JEAN DOBBS
EDITORIAL
PUBLISHER: JEAN DOBBS
EDITOR: TIM GILMER
MANAGING EDITOR: JOSIE BYZEK
SENIOR EDITOR: IAN RUDER
SENIOR CORRESPONDENT: BOB VOGEL
ividuals with spinal
cord disabilities
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New Mobility (ISSN 1086-4741), Volume 27, Issue 273, is
published monthly by United Spinal Association, 120-34 Queens
Blvd, #320, Kew Gardens NY 11415.
Copyright 2016, all rights reserved. Reproduction without
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www.newmobility.com
4
NEW MOBILITY
Your Right To Drive Is Under Attack
In May I reported on adaptive van dealerships
no longer making rental vans available with
hand controls. I called out the nation’s largest
wheelchair accessible van dealer, MobilityWorks (61 stores), as a major offender. When
our right to drive is restricted by a company’s
policies, it is not only offensive, it may be illegal.
However, according to MobilityWorks’ director
of store operations, Trevorr Jurgensen, his company is sympathetic to our needs — it is their
insurance carrier that is calling the shots.
Jurgensen says that PSA Insurance and Financial Services, the leading insurer for adaptive
van dealers across the nation, requires the prospective driver (renter) to provide an “updated
prescription or certification from a certified
driver rehab specialist” identifying the type of
adaptive controls to be installed and proof that
the driver is qualified to use this specific type.
Jurgensen says that none of the MobilityWorks
stores has wheelchair accessible rental vans
available with hand controls installed. They do
not even stock hand controls. If a driver presents
the required documentation, the hand controls
must be ordered, purchased, shipped and installed prior to renting. The process would take
a minimum of one to two weeks.
As onerous as this policy is, a more restrictive requirement is engaging the services of
a certified driver rehab specialist (CDR) in the
first place. Six states do not even have CDRs
within their borders. Fifteen states have three
or fewer CDRs. Entire geographical regions are
very poorly served. A few states are exceptions. California, for instance, lists 15 CDRs, but
almost all of them are confined to Southern
California or the Bay area.
Even if you succeed in engaging the services of a CDR, you must then pay out of your
own pocket to become certified. Expect to
pay at least $500 to $1,000 for a “current” cer-
tification. All of this in order to rent and drive a
wheelchair accessible van with hand controls.
Your driver’s license or years of experience
driving with hand controls are no longer sufficient to prove you are qualified.
How did we regress to this sorry state?
Rampant consolidation and buy-outs. Local
family-run businesses are being taken over by
major national corporations whose policies are
more about liability and less about service.
New Mobility readers Felix and Vicky Gutierrez used to rent vans with hand controls from
a small company in northern California. When
MobilityWorks bought them out, the Gutier-
Local family-run businesses
are being taken over by major
national corporations whose
policies are more about liability
and less about service.
rez family had to rent a car with hand controls
from Hertz (no ramp or lift). In this month’s
letters they write: “One has to wonder why a
commercial car rental company can provide
hand controls, while a company that specializes in wheelchair accessible vehicles is so
short-sighted and insures with a company that
does not allow renters the independence they
should be entitled to.”
At the same dealer, Chuck McAvoy was not
allowed to test drive a van he was considering
buying since he had no CDR certification. Is driving with hand controls under attack? Is our right
to drive our personal vehicles next? What can
we do to protect that right? Post a comment or
send an email to [email protected].
— Tim Gilmer
CONTRIBUTORS
life beyond wheels
JULY 2016
CONTRIBUTING
EDITORS
Mark Mathew Braunstein was welcomed into the ranks of SCI by
way of a diving accident in 1990. Lucky him, his injury and recovery
were made into a short TV documentary (youtu.be/96EhHzN6RoI).
As a T12 paraplegic, he uses cannabis medicinally for below the
waist (leg spasms) and recreationally above. He is the author of
three books, including Radical Vegetarianism, and says he considers
cannabis a radical vegetable. He frequently contributes to many
holistic health magazines and to New Mobility. You can be outraged
by his counterculture writings at www.MarkBraunstein.org.
A motorcycle accident in 2003 left Matthew Castelluccio with a T6
spinal cord injury. He credits the United Spinal Association with
providing the resources and mentoring to help him become comfortable as a paraplegic, and Helen Hayes Hospital with exposing
him to adapted sports. Following his rehab there, he joined the hospital as its adapted sports program coordinator/patient mentor in
November 2007. He has not only facilitated the hospital’s membership as a Paralympic Sports Club and a Disabled Sports USA chapter, but has spearheaded the establishment of the Hudson Valley
Chapter of United Spinal, of which he is president.
Embracing living with a T4 spinal cord injury in 2002 with seeming
ease, Steve Dalton wondered why this usually difficult transition
went so well. Years later he learned about the science of posttraumatic growth and focused his senior thesis on the intersection
between PTG and the humanities in completing his bachelor of arts.
Since his injury he has been able to share his growth experience
and scholarly interests in peer support groups, as well as lecturing in
PT, OT and humanities classes. He lives in San Pablo, California with
his wife, Sydney, and their new kitten, Camhi.
Steve Wright is an award-winning travel writer who has been
a mainstay freelancer for New Mobility for two decades. His
interests include universal design as well as travel. Whether on
the road solo or with his wife Heidi Johnson-Wright — an ADA
expert (and also a NM freelancer) who has used a wheelchair
for 40 years — he searches out the perfect blend of local culture and barrier-free access. Steve and Heidi live in Miami. Read
Steve’s blog at urbantravelandaccessibility.blogspot.com
MICHAEL COLLINS
MIKE ERVIN
ROXANNE FURLONG
RICHARD HOLICKY
PRISCILLA MALTBIE
ALLEN RUCKER
ROBERT SAMUELS
ERIC STAMPFLI
ELLEN STOHL
BOB VOGEL
LOREN WORTHINGTON
COMMUNITY PARTNERS
KIM ANDERSON
CHRISTIAAN “OTTER” BAILEY
MARTY BALL
TIFFINY CARLSON
LAWRENCE CARTER-LONG
RORY COOPER
JASON DASILVA
DEBORAH DAVIS
TOBIAS FORREST
JENNIFER FRENCH
ALLISON CAMERON GRAY
MINNA HONG
MARK JOHNSON
GARY KARP
NANCY BECKER KENNEDY
BRITTANY MARTIN
LINDA MASTANDREA
LYNN MURRAY
ASHLEY LYN OLSON
TEAL SHERER
TARI HARTMAN SQUIRE
MITCH TEPPER
REVECA TORRES
ANTHONY TUSLER
KARY WRIGHT
J U LY 2 0 1 6
5
The Women of Rugby New Gait Brace Cycling for All
UBER: Does the
Transportation Revolution
Include Us?
LETTERS
life beyond wheels
When Uber and Lyft started here, the taxi
company decided to stop offering the
[wheelchair accessible vehicle] service.
Ride Sharing Comes, Taxis Leave
In Corpus Christi the local taxi company had WAVs, but when Uber and Lyft
started here, the taxi company decided
to stop offering the service [“Uber: Does
the Transportation Revolution Include
Us?” May 2016]. They claimed that the
competition from the ride sharing forced
them to cut costs. After the city passed a
law requiring a fingerprint check, the ride
sharing companies left town. The city’s
bus service for wheelchair users is unreliable. So now there is no transportation for
wheelchair users. I am restricted to going
only as far as I can in my power wheelchair, about one mile.
John Ralph
via newmobility.com
Cool OpenTaxi App
In Chicago, they have the OpenTaxi app,
which allows you to arrange for a wheelchair accessible taxi through your iPhone
and see the cab on a map as it approaches
your location. Pretty cool.
John Hauschildt
via newmobility.com
Hand-Control Rentals Denied
Two years ago we attempted to rent an
accessible van with hand controls from
MobilityWorks, which had bought out
Nor-Cal Mobility, where we had previously
rented accessible vans on more than one
occasion [“Where Have All the Rental Vans
Gone?” Bully Pulpit, May 2016]. We were
told that they did not have any rental vans
with hand controls available. When we
inquired further, they insisted that due to
insurance regulations they can no longer
rent vans with hand controls. We asked
about this at the Abilities Expo later that
year, and were fed the same line.
Being determined to rent an accessible
6
NEW MOBILITY
vehicle that we could both drive for our
trip to southern California that year, we
contacted a number of commercial car
rental companies. Hertz was able to rent
us a car with hand controls which they
installed for us at no extra charge. This
vehicle was not equipped with a wheelchair ramp, so we were limited to the push
chair, which had to be loaded and unloaded from the trunk, but we were grateful
for what we were able to get.
One has to wonder why a commercial
car rental company can provide hand controls, while a company that specializes in
wheelchair accessible vehicles is so shortsighted and insures with a company that
does not allow renters the independence
they should be entitled to.
Felix and Vicky Gutierrez
Richmond, California
Women and Quad Rugby
I played recreational quad rugby for three
years and worked out with a team for
almost a year [“Hitting Like Women,” May
2016], classified and participated in one
tournament. Some male attitudes seem to
be that if you aren’t getting injured, you
aren’t giving 110 percent. Most women
are not encouraged to participate, let
alone play on a team. I still love the sport.
But I’m too old and my arms can’t take the
punishment now.
Lois West
via newmobility.com
Nowhere to Turn
I have a four-year-old chair that constantly
needed tweaking. I was fortunate enough
to have a friend who would help me when
small repairs were needed [“Frustrated
About Trying to Get Your Wheelchair
Fixed? You Are Not Alone,” May 19 NM
blog]. Finally, work needed to be done
newmobility.com
MAY 2016 $4
that was beyond his ability, so I spent
many hours trying to find a repair shop.
Most wanted to sell me a new chair, not
repair my present one. I was also told
that the charges were my responsibility,
as insurance or Medicare did not cover
repairs. At last I found a shop that would
“try” to help me out. They charged me
$313 to work on it but could not guarantee the work. Eight months later I am
experiencing many of the same problems
and don’t know where to turn. I have
recently purchased a new chair as a backup, also at my expense. Sad state of affairs
for immobile individuals, it seems.
Trudy Decker Pratt
via newmobility.com
My Chair Is My Legs
When my wheelchair broke down [I was
told] it would be two weeks before it was
repaired and they did not have a loaner, so
I would have to use a manual chair. I said
that was unacceptable because I needed to
get to my son before he put a finger in the
outlet or before he got the matches. People
really do not understand! I so badly want to
take everyone’s car away!
Melissa Monser
vianewmobility.com
Had to Eat My Cost
My company had a United Healthcare
contract for nine years. We had to cancel it
because we disliked calling patients [customers] all the time to say, “I’m sorry, your
insurance will not even cover the cost of
the parts.” My cost, mind you. We’re not
even talking about retail or even a reasonable margin. They wanted to pay me less
than I had to pay to buy the parts for my
customers!
David Nix
Alabama Wheelchair Specialists
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NEWS
Outrage Against ‘Me Before You’
Outrage against the movie Me Before You
by people with disabilities began escalating prior to the movie’s opening in theaters on June 3.
The movie, based on JoJo Moyes’
book of the same name, bills itself as a
positive, life-affirming romance — its
Twitter hashtag is #LiveBoldly. But it ends
with its young quadriplegic protagonist, Will Traynor, being euthanized in a
Switzerland clinic, leaving his fortune to
his caregiver/girlfriend so she could have
financial freedom.
Pushback against the movie’s message
of “better dead than disabled” began on
May 23, when disabled tweeters crashed
#AskSam, hosted by Sam Claflin, the actor
playing Traynor. “#AskSam why don’t you
#LiveBoldly ever after with Louisa? That’s
what we would do,” said one tweet by
Second Thoughts’ John Kelly, a quadriplegic from Boston, Massachusetts.
“The movie’s tagline is: ‘Live Boldly.
Live Well. Just Live.’ Yet, Will does quite
the opposite,” wrote Emily Ladau, who
has Larsen syndrome, in Salon on May 24.
“The entire premise rests on the belief that
life with a disability is not worth living. In
spite of each of the characters in Will’s life
trying to persuade him otherwise, the fact
remains that Moyes imagines a world in
which disability is synonymous with misery
and assisted suicide is the only solution.”
Then on May 25, members of Not Dead
Yet-UK protested the film’s posh London
premiere, which was attended by Moyes
and cast members, including Game of
Thrones’ Emilia Clarke, who played Louisa.
“This film is offensive to disabled people,
the vast majority of whom want to live —
not die,” said Liz Carr, who led the protest.
An actor with muscular dystrophy, Carr is
well known in the United Kingdom for her
role in the BBC’s Silent Witness.
On June 8, Joni Eareckson Tada, founder
of the longstanding Christian ministry, Joni
and Friends, said in a press release: “In the
movie, the quadriplegic says to his loved
one, ‘I don’t want you to miss all the things
someone else can give you.’ Instead, he
took away everything she wanted from
him — his love and the essence of who he
was — when he decided to end his life. Not
People in the News: Foster Andersen Helps Wheelers Hit the Waves
T
he waves will not be the only thing rolling onto the shore
of Cowell’s Beach on Saturday, July 16. Wheelchair users of
all ages will gather upon the Santa Cruz, California, coastline
for the 24th Annual Day on the Beach. The yearly event, the
brainchild of Foster Andersen, brings together people with disabilities to take part in accessible beach
activities such as kayaking, outrigger
canoeing and scuba diving.
A Day on the Beach is one of the
nonprofit Shared Adventures hallmark
events and marks a bittersweet anniversary for Andersen. “I was injured on
July 17 and I always wanted a positive
celebration to commemorate the anniversary.” Anderson, quadriplegic since
his 1978 motorcycle accident, went on
to say, “While in many ways I suffered a
loss, I was able to survive and live again
even if it was in a different way. A Day on
the Beach has been a perfect way to celebrate what I and so many of us can still
do after injury.”
Andersen and his staff, along with
8 NEW MOBILITY
hundreds of volunteers, will transform the beach into a rolling
seaside oasis filled with over 200 plywood planks so wheelchair users can move freely over sand. Beach wheelchairs will
also be available. In addition to the many water activities, the
event also features live music, rock climbing, massages and
sand castle building.
Shared Adventures works tirelessly
throughout the year to provide other recreational activities such as art and gardening
classes, adaptive yoga classes, and a four day
summer camp for children with disabilities.
They also organize outings on local yachts,
trips to the aquarium and picnic potlucks.
Andersen says Shared Adventures has
given him a renewed sense of purpose.
“Being disabled doesn’t mean a death sentence,” he says. “There is still so much we can
do, and it’s my passion to help those who
want to be adventurous, who want to experience all that life has to offer.”
For more information on Foster Andersen
and Shared Adventures, visit: www.shared
adventures.org.
only does this movie glamorize assisted
suicide; it conveys the distinct impression
that marriage to someone with quadriplegia is too hard, too demanding and sorely
lacks the joys of typical marriage.” Tada,
a quadriplegic who has been married for
nearly 34 years, went on to say that she
and her husband have a “deep and satisfying relationship” characterized by patience,
self-sacrifice, endurance, respect and joy,
all of which are related to her disability.
While the initial pushback no doubt
galvanized the disability community, it
apparently did not discourage moviegoers.
According to a June 5 LA Times article, the
film exceeded expectations for its weekend debut, grossing $18.3 million. The
article went on to say that “audiences gave
it an A CinemaScore. Critics, however, were
more split with only 55 percent of them on
Rotten Tomatoes rating it favorably.”
Pathway SCI Stem Cell Trials
Shut Down Abruptly
Stem Cells, Inc. has shut down its promising Pathway SCI stem cell trials, saying
improvements from participants are “not
big enough” for investors.
On May 31, in a press release that
shocked the SCI and research communities, Stem Cells, Inc. announced it was
shutting down its Pathway SCI research
trials using adult neural stem cells. These
were the same trials that participants
reported seeing promising results from,
such as increased hand function and
better bladder control. [“Stem Cell Trials
Show Improved Hand Function, Sensation
and Bladder Awareness,” June 2016].
Less than one month earlier, Stephen
Huhn, the company’s lead researcher and
chief medical officer, had told <H>New
Mobility<H> that he was optimistic about
the trials, saying, “We will be enrolling
more subjects in the ongoing trials at
least through September.” But the company’s board of directors, after revisiting
outcome data and “given the financial
resources available to the company,”
decided to close down the trials.
Kim Anderson-Erisman, Ph.D, associate professor, department of neurological
surgery, Miami Project to Cure Paralysis,
was surprised by the announcement. “It
was a shock to us [and] … we’re one of
the top sites in the study. The sad part is
they did an interim analysis on a subset
of the subjects enrolled in the randomized cohort and they saw improvement
in the treatment group compared to the
control group, but not a ‘big enough’
improvement for their investors to continue their funding. It’s disappointing
because even small improvements can
have a significant impact on the lives of
people living with SCI.”
The trial results, according to Huhn,
were still encouraging. “There are neurological and retinal disorders with unmet
need that may be helped by cell transplant. Unfortunately,” he added, “the
company does not have the resources to
implement changes in our development
program to permit further investigation.”
The press release also stated that the
board of directors had approved a plan to
“wind down the company” and that “it is
possible that there will be no liquidating
distribution to stockholders.”
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9
EVERYDAY ADVOCACY
Perfume in my Workplace
By Michael Collins
Q. I work for a company that made an
accommodation for me and my wheelchair,
which allows me to work on the first floor of
our two-story building. Others in my department work upstairs, but our office building
lacks an elevator. I now have a larger problem. Another employee on this floor wears
a perfume or cologne that makes it difficult
for me to breathe, gives me migraines,
causes my heart to beat faster, makes me
nauseous, my legs weak and causes them
to spasm. It is impossible to focus on my
work when that happens.
When I confronted her about it, she
laughed at me and said it was “a personal
problem.” I brought up the issue with my manager, who had a talk with her, but it didn’t do
much good. She wore the scent again the next
day, knowing the impact it was having on
me. In fact, I think she began wearing an even
larger amount of the perfume after that.
This situation makes me nervous — I
have heard that Ohio has a “no-fault”
employment law that would allow an
employee to be dismissed without being
given an explanation. If that is true, I am
afraid the company might just let me
go instead of dealing with the problem I
brought to their attention. Do I have any
protection from such an action? I would
appreciate some advice.
— Nervous, and Sick, at Work
irst you should identify the cause
of your physical problems and the
extent of the potential harm. The
next time symptoms occur, visit your
physician or an allergist to document the
cause and provide that information to
your company. Your employer can then
focus on whatever might make you ill or
unable to work. While you may believe
your co-worker is the root of your prob-
F
10
NEW MOBILITY
lems, environmental illnesses or chemical sensitivity can also be related to
commonly used scented additives. Tests
for allergic reactions can help you avoid
such products. Sometimes the physical
reaction to them can be debilitating or
even life-threatening.
Environmental illnesses or allergic
reactions can also be caused by products
used in construction, or in furnishings, like
carpets. For instance, formaldehyde, which
for many years was used as a component
of insulation. Those products are hidden
from view but can have the same impact
as other, more visible, causal factors.
In order to make the workplace safe
for all, many companies and government
agencies have, as a reasonable accommodation, established scent-free workplace
policies. If that doesn’t improve your
situation, your employer could relocate
you (or any co-worker who refuses or is
unable to comply with the policy) to an
area that won’t put your health at risk.
Options may include a private office,
telecommuting or placing air purifiers or
fans in your existing work space. Other
potential solutions can be found online at
the Job Accommodation Network.
Since the conversation with your
manager did not resolve the situation,
request a meeting with your human
resources officer. That person will have
responsibility for determining what
accommodation may be necessary, and
will also be responsible in case the company’s attempt at resolution is unsatisfactory and results in a formal complaint.
Depending on whether you are working
for a private or government employer,
the Americans with Disabilities Act
(Title I or Title II) may be applicable to
your situation. The Equal Employment
Opportunity Commission or a similar
state agency enforces the ADA and
also any state civil rights laws relative
to employment. Procedures for making
complaints can be found online, and
you can receive advice or representation
regarding a complaint from your state’s
Disability Rights organization.
The ADA Amendments Act of 2008
covers employment and situations like
you are experiencing. Changes in the
law that took effect Jan. 1, 2009, clarified
what comprises a disability and expanded
coverage of the law to include more
conditions. Since you have a pre-existing
mobility disability that causes you to need
a wheelchair, your company provided the
necessary accommodations to allow you
to work there. Problems you face related
to environmental causes (your co-worker’s
fragrance) would require other courses of
action on the part of an employer.
By establishing that your physical
health makes you unable to work under
certain circumstances and the reasons for
that, then documenting that with your
employer, you will receive the protections
that the ADA and state civil rights laws
grant. Retribution would be illegal and,
unless you goof up otherwise at work, you
would be protected from being penalized
or fired due to your disability. That should
get you started, and good luck.
Resources
• Department of Justice ADA homepage,
www.ada.gov
• Equal Employment Opportunity
Commission, www.EEOC.gov
• Job Accommodation Network, askjan.
org/soar
• National Disability Rights Network,
www.ndrn.org
SCI LIFE
By Tiffiny Carlson
Pontooning Just Got Cooler
“It all starts with
not letting your
injury limit your
true self.”
Heidi McKenzie Wants to Alter Ur Ego
For Heidi McKenzie, fashion took
a back seat after she suffered a
spinal cord injury in 2007. After
becoming a T4 paraplegic in a
car accident, McKenzie resorted
to the usual mode of “nothing
will work in a wheelchair.” As a
21-year-old student studying
fashion merchandising at Ohio
State University, she didn’t see
how she could still pursue a
career in fashion.
“After my accident I attended
Morehead State, and they didn’t
have a fashion program, but
even if they did, I don’t know
that I would have studied fashion. I didn’t quite know how I
would fit in the fashion industry
as a girl in a wheelchair,” says
McKenzie, now living in Saltlick,
Kentucky. She instead graduated
with a bachelor’s in small business management.
In 2012, she became Miss
Wheelchair Kentucky, a title that
gave her the courage she needed. “When I went on to compete
in Ms. Wheelchair America as part
12
NEW MOBILITY
of my title, I was able to spend
time with women wheelchair
users from other states and realized we all struggled to find fashionable, functional clothing.” This
knowledge gave Mackenzie the
push to start her adaptive clothing line — Alter Ur Ego.
After a successful Kickstarter
campaign, she was able to fund
her fashion label, and in the fall
of 2015 her company began production. Her jeans are created
for wheelchair users on multiple
levels — they have thigh pockets, a catheter hole, a tummy
panel, a higher back, an elastic
waistband and they’re made
of a soft denim. Both men and
women’s styles are available.
McKenzie, 30, firmly believes
that fashion can change your
entire mindset after an injury.
“How you feel on the inside
shows on the outside,” she says.
“It all starts with not letting your
injury limit your true self.”
See her creations at:
alterurego.com
If you’re a big fan of the water and have
always dreamed of an accessible watercraft, Klein Ponton Boat, a custom boat
builder in Denmark, is an accessible manufacturer to watch. They’ve created a line
of accessible pontoon-like boats called
“disabled friendly leisure boats,” and they
are something to behold.
They come with an adjustable ramp outfitted to your wheelchair dimensions, and each
boat is designed and constructed for each
purchaser from scratch. One of the cooler features of their boats is that they can be steered
using a joystick control system, which is perfect for quadriplegics.
The boat deck, too, is accessible, featuring a skid-proof floor made of PVC that looks
like teakwood. For the anglers with injuries
out there, Klein has certainly set the standard high for accessible boats. Hopefully
manufacturers in the United States will follow suit very soon.
Go to: klein-ponton-boat.dk/en/disabledfriendly-leisure-boats
Watch Out Bobby Flay
If you’re a fan of cooking shows, check out
“Kickin’ It in the Kitchen,” a how-to cooking show hosted by David Robertson, a C6
quadriplegic
from Arizona.
He shows his
techniques
for everything
from opening bags to
flipping sandwiches, and
he’s learning as he films his videos, which is
great for newbies.
Watch: youtube.com/user/waylandhi
EAT WELL, LIVE WELL
Eat Your Mosquito Repellant
Summer is great, just not the mosquitos that
come with it. And if you have limited movement and dexterity, swatting those annoying
blood suckers away can be a long lasting pain
… or itch.
Mosquitoes find their warm-blooded
victims by smell. Their sensory organs lead
them to chemicals such as carbon dioxide
and lactic acid that we exhale. While the
most popular and effective bug repellant is
DEET (which masks the chemical signals that
mosquitos use to find their food sources), it
is toxic to fish and birds, and can cause skin
irritation in humans. In Canada, where I live
and mosquitos roam large in the summer,
our government recommends limiting DEET
concentrations to no more than 30 percent.
So if you’re looking for a more environmentally friendly and safer way to protect yourself
from mosquitoes, eat garlic — and lots of
it! This herb contains powerful compounds,
such as allicin — which is released in our
breath — and sulfur that is emitted through
our skin. Together these two natural elements
can help repel these irritating mosquitos.
Several days before you take a trip into
mosquito-filled territory, start eating one or
two cloves of garlic a day. Also, this simple,
easy to prepare garlic recipe I’ve included can
be used as a chicken marinade or salad and
quinoa dressing. Not only will this savory
sauce keep mosquitoes at bay, but you’ll
also get the added benefits of garlic’s potent
medicinal properties, such as supporting
cardiovascular and immune function, reducing blood pressure, lowering cholesterol and
enhancing liver detoxification.
If you are not a fan of the taste of garlic, but
still looking for a healthier option to DEET, try
making your own repellant spray. Yes, you may
end up smelling like a pizza parlor, but better
that than being a buffet for mosquitoes!
Mosquito Marinade/Dressing
½ cup extra virgin olive oil
2 tsp Dijon mustard
¼ cup fresh lemon juice
¼ cup apple cider vinegar
Pinch sea salt
2-4 cloves garlic
Combine everything in blender for 10
seconds.
By Joanne Smith
and Kylie James, authors of
Eat Well Live Well with SCI and
Other Neurological Conditions,
eatwelllivewellwithsci.com
Mosquito Spray
4-6 cloves garlic
¼ cup cooking oil (olive or vegetable)
2 cups water
1 tsp fresh lemon juice
Coarsely mince cloves of garlic and cover
them in bowl with oil. Allow to sit and
soak for 24 hours.
After they have finished soaking, remove
the minced garlic chunks and mix the oil
with 2 cups water and fresh lemon juice.
Strain everything through a cheesecloth
and add to a spray bottle.
Spray away!
J U LY 2 0 1 6
13
Accessing
AMERICANA
3
uniquely
american
travel adventures
B Y
A
mericana still exists all over our
great nation. It comes in different
forms, defined by deep-rooted local traditions embodied in sights, smells
and sounds that spring only from iconic
locations, such as: Cajun country —
zydeco on stage, swampy bayous in the
distance and boiled crawfish spread out
on the lunch table; the Heartland — bluegrass radio, cool glacier-cut gorges dotting the landscape and homemade bed
and breakfast fare on the table; and Out
West —Native American chants bouncing off ethereal rock formations and a
fine spread of Navajo fry bread and beef
stew waiting at the dinner table after a
day of exploring the beauty of the desert.
14
NEW MOBILITY
S T E V E
W R I G H T
Wheelchair users and their families can
explore Americana via access to these remote, historic areas with ramped entrances to restaurants and attractions, boardwalks and paved trails, and lodging with
roll-in showers, accessible common areas
and ground-floor rooms/large elevators to
upper floors. It can also be accessible by car
or van and should be reasonably priced,
where a couple can stay three days and two
nights, eat local fare and pay for attractions
while keeping the total bill as close to $500
as possible.
Here are the details that capture this
trio of accessible, affordable examples of
Americana:
Monument Valley/
Navajo Spiritual
Encounters -
UTAH/ARIZONA
Desert solitude and silver screen-worthy
rock formations — that’s what drew legendary Western movie director John Ford
to Monument Valley. The heavenly scenery and fresh air will draw you to the corner of southeastern Utah and northeastern Arizona. It is especially engaging in
late October, when the mercury rarely exceeds 70 degrees — even in this arid des-
Photo by Steve Wright
Heidi Wright gazes over
Monument Valley.
floor. This white knuckle route provides
breathtaking views of some of Utah’s
most beautiful sites. But nothing compares to Monument Valley. Poets, priests
and great writers of prose have failed to
coin words worthy of the spiritual feeling
that overtakes every person who gazes
upon its majesty.
Cajun Country
-
SOUTHWEST LOUISIANA
Cajun doesn’t get any more authentic
than life in Breaux Bridge, Louisiana.
Named for the wooden footbridge built
over Bayou Teche by Acadian pioneer
Fermin Breaux, the tiny community is
famous for music and food. Both can be
had every Saturday morning at Café des
Amis, in the center of town. A ramped
entrance leads into a decent-sized bar,
restaurant, stage and dance floor. Zydeco
is the big draw, as it has been for years.
Saturdays mean zydeco breakfast,
from 7:30 a.m. to 11 a.m., every Saturday
except those that fall on a major holiday.
They don’t take reservations, so come
early. Crowd in on the sidelines and drink
a dirt cheap, stiff Bloody Mary while
watching a great harmony of sweaty
bodies dancing up a storm to zydeco, a
purely American music that started in
rural Louisiana in the early 20th century.
Twirl to the sounds of accordion, fiddle,
drums, guitar, bass and vest frottoir – a
percussion instrument fashioned from
pressed, corrugated steel and worn over
the shoulders.
Photo courtesy of City of New Iberia
Photo courtesy of Utah Office of Tourism
ert climate. Toward the end of a fall day,
the light is forever painting and repainting
the valley’s rocky fortresses. Blues become
light purples, then dark purple, then fiery
red, then back to blackish blue.
Monument Valley is a 30,000-acre Navajo tribal park established in 1958 located
on the border of Arizona and Utah within
the 16 million-acre Navajo Reservation.
The barrier-free visitor center has clean restrooms, an air-conditioned gift shop and
excellent observation areas for breathtaking views of the iconic Mittens and Merrick Butte. The visitor center building has a
small elevator that takes wheelers up to the
second story observation deck.
A 17-mile loop road winds along the
valley floor among the rock sentinels
that tower 400 to 1,000 feet above. The
road is raw and unpaved, but that’s a
good thing because it slows traffic to a
nice leisurely pace.
The View, the only hotel on Navajo
land, features an accessible room with a
patio that opens up to the majestic valley. The room, with a roll-in shower and
private balcony, starts at $150 per night.
There is an on-site restaurant and trading
post for supplies. Local dining options
are limited to the restaurant at the View,
or the dining room at the famous Goulding’s Lodge just outside the Tribal Park.
Goulding’s barrier-free trading post and
grounds are a perfect backdrop for feasting on a menu of Navajo frybread with a
side of beef stew, spicy pork green chile or
chili con carne.
Nearby attractions include Goosenecks State Park, a half-hour drive from
Monument Valley. It features a paved
road that ends at a scenic overlook with
amazing views about 1,000 feet above
the winding San Juan River and switchback formations the river carved out of
the rocky area. Another half hour from
Goosenecks is the Valley of the Gods. A
17-mile dirt and gravel road, passable in a
family car when the weather is dry, winds
through the valley. The sandy, bumpy, often steep drive is usually deserted — and
that’s a good thing.
The Moki Dugway — just northwest
of the Valley of the Gods — is a staggering, graded dirt switchback road
carved into the face of the cliff edge of
Cedar Mesa. It consists of three miles of
steep, unpaved switchbacks that wind
1,200 feet from Cedar Mesa to the valley
Roll off all those beignets, biscuits and andouille grits with a stroll along the Bayou Teche.
J U LY 2 0 1 6
15
Beignets, biscuits and andouille
cheese grits highlight a menu that also
features couche couche (Cajun cereal
made of cornmeal and milk with syrup
and sugar) and the inimitable oreille de
cochon (boudin-stuffed beignet dough
shaped like pigs’ ears with powdered sugar) — mmmm. After breakfast, roll over
to swampy Bayou Teche. Check out the
19th century buildings and visit Breaux
Bridge Antique Mall. It’s your typical
musty, shelf-stuffed place — with some
aisles accessible and a few too narrow to
negotiate by wheelchair.
Breaux Bridge is the Crawfish Capital
of the World and Café des Amis serves
‘dem mudbugs in eggs for breakfast, in
po boy sandwiches at lunch and as crawfish pies and platters of half etouffe/half
fried crawfish for dinner. For less formal
dining in a barrier-free setting, head to
Poche’s Market Restaurant and Smokehouse for spicy boudin, cracklins, fried
catfish, fried shrimp, crawfish etouffe
and weekend barbecue plates.
New Iberia, about 25 miles from
Breaux Bridge, offers the accessible
Bayou Teche boardwalk between Weeks
Street and the Duperier Street Bridge
— behind the Shadows-on-the-Teche
historic attraction. City Park has a new,
accessible deck on the water. Main Street
itself is packed with historical buildings,
served by accessible sidewalks with curb
ramps. Spanish Lake, just a few miles out
of New Iberia’s center, features five accessible fishing piers on its main levee road.
Bayou Carlin Cove in Delcambre, about
15 miles from New Iberia, has a new
boat dock/fishing pier constructed to be
wheelchair accessible.
St. Martinville, about 15 miles from
Breaux Bridge, pays tribute to Henry
Wadsworth Longfellow’s epic poem,
“Evangeline,” about the heartbreaks
encountered by the Acadian people’s
expulsion from Canada and grueling resettlement in Louisiana. The LongfellowEvangeline State Historic Site visitor’s
center has outstanding accessible restrooms. The first floor of Maison Olivier,
an 1815 plantation house, is wheelchair
accessible. The entire Attakapas Trail,
named for the Attakapas Native Americans that inhabited the area before the
Acadians, is paved and accessible.
Maison des Amis has limited access in
one of its rooms. The grounds of this bed
and breakfast right next to the historic
district are accessible. For a 100 percent
accessible room, book one of three rooms
with roll-in shower at the Staybridge
Suites in Lafayette, about 11 miles from
Breaux Bridge.
Hocking Hills
OHIO HEARTLAND
Get your heart pumping on Saturday morning with Café des Amis’ zydeco breakfast.
16
NEW MOBILITY
-
Sometimes the place of lodging is simply
a small room for sleeping. Sometimes
the place of lodging is the attraction. The
Inn & Spa at Cedar Falls, in the heart of
the Hocking Hills, is such a place. Longtime innkeeper Ellen Grinsfelder created this accessible paradise when she
invited a friend who uses a wheelchair to
do a walk-through. The result is wonderfully accessible accommodations nestled
along a gorgeous, wooded ravine where
the nighttime sky dazzles with its display
of heavenly bodies so bright that visitors
feel as if they’ve entered a brilliant cathedral of stars.
A roll-in shower, with grab bars and
space enough to allow sufficient room for
both a wheelchair user and personal care
attendant, is the main feature of the Redbud cabin. The cabin itself is big enough
to live in, with a full kitchen, sitting area
and accessible bedroom on the first floor
reached by a ramp. Kitchen items — flatware, silverware, tea bags, salt and pepper,
even flashlights — are located where they
can be accessed from a seated position.
One can linger outside, day dreaming on the porch swing and taking in
the wooded vista, or come inside to the
aroma of cedar and a plate of homemade
cookies on the kitchen table. Take a seat
Photo courtesy of Ohio Department of Natural Resources
Not all of the trails in Hocking Hill state park
are accessible, but the quarter-mile hike to the
stunning water fall in Conkles Hollow is.
in the cozy living room by the gas fireplace. Forget the distraction of television
— there is none in the cabin, but it does
have wi-fi for those who cannot entirely
unplug from civilization.
The spa, meeting place and dining
room are all accessible. Breakfast includes fare such as: fresh fruit, homemade granola, Applewood smoked bacon, potato scallion soufflé and house
made muffins or breads. Seasonal lunch
and dinner features soups, salads, sandwiches and entrees ranging from crispy
striped bass to spiced rack of lamb.
Resources
Listed first after each destination
name is the approximate cost for
three days, two nights including
lodging, six meals, park admissions and gas money to drive
between attractions.
Cajun Country — $420-$500
• Breaux Bridge, breauxbridgela.net
• Café des Amis (breakfast from
$10, lunch/dinner entrees from
$17); 337/332-5273, www.
cafedesamis.com
• Poche’s Market Restaurant and
Smokehouse (plate lunches
for $12); 800/376-2437, www.
pochesmarket.com
• New Iberia, www.cityofnewiberia.com
• Longfellow-Evangeline State
Lake Hope Lodge offers another
dining opportunity focused on locallysourced comfort food. The accessible
lodge, located in a state park, has a famous Sunday brunch with made-fromscratch buttermilk biscuits, cinnamon
rolls, brisket hash, pulled pork, smoked
turkey and berry cobbler with fresh
whipped cream. Lunch and dinner feature scratch made soups and chili, grilled
Ohio chicken, beef brisket, fried catfish
and wood-smoked ribs.
While the majority of the glaciercarved area’s state park trails are too
rugged for the average wheelchair user
to negotiate, the quarter-mile paved trail
to Ash Cave is very wheelchair-friendly.
Commencing at accessible parking spaces, the trail ends at a massive shelter cave
and 90-foot waterfall. The Conkles Hollow Gorge Trail extends a half mile from
the parking area on Big Pine Road into
the upper end of the gorge, below a waterfall. It is paved, very easy for wheelers
to roll along and is an absolute must-do
with the deepest gorge and the highest
cliffs in the Hocking Hills. The Hockhocking Adena bikeway is a paved, level
bike path located on the old Columbus
and Hocking Valley Railroad bed. It runs
from the Nelsonville Historic Square
Arts District 22 miles south into Athens,
home of Ohio University.
This area, at the foothills of the Appalachians, has no shortage of roots music.
Every year, from Friday through Sunday
Historic Site (admission $4);
888/677-2900, www.crt.state.
la.us/louisiana-state-parks/
historic-sites/longfellow-evangeline-state-historic-site
• Maison des Amis (rooms from
$125); 337/507-3399, www.
maisondesamis.com
• Staybridge Suites Lafayette
(suites from $140); 800/2388889, www.staybridge.com
Hocking Hills — $410-$500
• Hocking Hills – Ash Cave &
Conkles Hollow (free admission);
740/285-6842, parks.ohiodnr.
gov/hockinghills
• The Inn & Spa at Cedar Falls
(Redbud ADA cabin — big
enough to split cost with second,
This area, at the foothills of the
Appalachians, has no shortage
of roots music. Every year, from
Friday through Sunday of Father’s
Day weekend, the downtown
streets of Logan come alive with
the celebration of the washboard
as a musical instrument.
of Father’s Day weekend, the downtown
streets of Logan come alive with the celebration of the washboard as a musical
instrument. Everything from jug bands
to Dixieland groups play the Washboard
Music Festival in the hometown of the
Columbus Washboard Company, the
only remaining washboard manufacturing company in the U.S.
Over four days, usually in late May
or early June, the Nelsonville Music
Festival offers multiple stages of music along with local art vendors, food
and a beer garden. The eclectic list of
past performers — Wilco, The Flaming Lips, Willie Nelson, Loretta Lynn,
John Prine, Dinosaur Jr., Yo La Tengo,
George Jones and Gogol Bordello — is a
slice of Americana in itself.
nonbodied family sleeping
upstairs — from $170 low season, Sumac accessible cottage
— smaller than cabin — $40
cheaper per night than Redbud);
800/653-2557, innatcedarfalls.
com
• Hockhocking-Adena Bikeway
(free admission); athensohio.
com/wheretoplay/hockhockingadena-bikeway-2
• Lake Hope Lodge (Sunday
brunch $15); 740/596-0601,
lakehopelodge.com
• Washboard Music Festival (free
admission); 740/380-2752, www.
washboardmusicfestival.com
• Nelsonville Music Festival ($75
one day admission); 740/7531924, nelsonvillefest.org
Monument Valley — $400-$500
• Monument Valley Tribal Park
(entry fee is $20 per car, up to
four people); www.navajonationparks.org/htm/monumentvalley.htm
• The View Hotel (accessible
room with roll-in shower from
$150); 435/727-5555, monumentvalleyview.com
• Goulding’s Lodge (lunches from
$12); 435/727-3231, www.gouldings.com/dining-room
• Goosenecks State Park (free
admission); 435/678-2238, utah.
com/goosenecks-state-park
• Valley of the Gods (free admission); utah.com/monumentvalley/valley-of-the-gods
J U LY 2 0 1 6
17
NOW
AVAILABLE
WITH OPTIONAL
8” SOLID
CASTERS
“It’s forever inspiring how
even in the simplest of
moments, an embrace
with my wife changes
everything.”
Mark “Wheelchair
Junkie” Smith
more hugs.
T. Gross I love mine as
well. I’ve been truly blessed
with this wheelchair!
M. Henson I’m just
weeks away from getting this
chair and I can’t wait. I’ve had
an opportunity to use a demo
for a week and this chair is a
game changer.
D. Heilman Flipping
fantastic! Everyone deserves
to look at another eye-to-eye…
not up or down.
Join the conversation.
www.ilevel.rehab
|
(US) 866-800-2002
L. Boccuti This is so
great. My husband felt claustrophobic in his chair in a crowd
because he was so far down.
This would have helped that
so much.
/quantumrehab
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WALKING
CAN
SCI DAMAGE?
UNL CK
BY IAN RUDER
T
here have been some exciting developments around SCI research
in the last few years (see “U.S.
Stem Cell Trials Show Encouraging Results,” June NM), but Dr. Wise
Young is far from satisfied.
“We need to bring spinal cord injury
back into the mainstream of medicine,”
he says. “We’ve been shut out because
for the last 12-15 years, there have been
no clinical trials of anything. It’s just a
bunch of people sticking things into the
spinal cord and not doing any control
studies, and being criticized.”
For Young, the director of the W.M.
Keck Center for Collaborative Neuroscience at Rutgers University, and one of
the most visible and educated faces on
SCI research, satisfaction and progress
are both tied to the same thing: rigorous
clinical trials. Young and a huge team of
doctors and researchers have been working on just that for the last five years in
China, and thanks to some exciting and
unexpected results, he is optimistic that
the tide may be about to turn.
WHAT WE ARE LEARNING
FROM CHINA TRIALS
If you’ve heard Young speak over the
last few years, or paid close attention
to the releases from the Keck Center or
ChinaSCINet — the clinical trial group
Young has helped establish in China —
you’ve likely heard bits and pieces of the
promising findings from his trials there:
complete injuries walking again, people
regaining bowel and bladder control
years after injury. All of the results were
published this May in an article in the
medical journal Cell Transplant entitled,
“Phase I-II Clinical Trial Assessing Safety and Efficacy of Umbilical Cord Blood
Mononuclear Cell Transplant Therapy of
Chronic Complete Spinal Cord Injury.”
Phase one of the study consisted of
eight participants at a site in Hong Kong,
while phase two included 20 participants
in Kunming, located in China’s south-
J U LY 2 0 1 6
19
“
We believe enough fibers have grown across the injury
site to activate the central pattern generator in the
lumbosacral spinal cord. The CPG in the lumbosacral
spinal cord contains all the programmed walking
motions, and we believe that enough fibers have
grown across to activate the CPG so that the person
can start and stop [walking].
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and below their injuries, in addition to
surgery to de-tether their spinal cords
and a large dose of methylprednisolone.
The big difference between the two phases was that the Kunming participants
also underwent what Young called the
“most intensive walking program in the
world” — six hours a day, six days a week
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for three to six months, covering long
distances with a rolling walker — while
those in Hong Kong did not.
The phase one results showed the
processes were safe, and imaging of the
spinal cords suggested some regeneration, but no participants recovered motor function. That set the stage for phase
two’s surprising results. “We were not expecting very much,” says Young. “However, in Kunming, it rapidly became clear
that a majority of the participants were
recovering function.”
Young broke down the results in a
May letter from the Keck Center:
At one year after treatment, 75 percent (15/20) of the participants in Kunming recovered the ability to walk long
distances in a rolling walker with minimal assistance. Thirty-five percent (7/20)
could walk without such assistance using
either a four-point walker or a crutches.
None of the participants could walk more
than 10 meters without substantial assistance at the beginning of the trial and
a majority were not even able to stand
without help. When they went home,
some of them did not have devices or
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people to help them walk and several regressed. However, 35 percent continued
to walk and became household walkers,
preferring to walk for distances up to 100
meters, but using their wheelchairs for
longer distances. Another unexpected
finding was that 60 percent of the participants became completely independent
including no longer needing any help for
bladder and bowel function. In fact, 55
percent stopped using catheters.
“We were quite stunned by these
results,” he says. He says he was also
intrigued to find that the same participants who had no trouble walking long
distances were unable to move their legs
if they lay down. “In other words, voluntary movement of the legs is very weak.”
“We believe that what is happening
is enough fibers have grown across the
injury site to activate the central pattern generator in the lumbosacral spinal
cord,” explains Young. “The CPG in the
lumbosacral spinal cord contains all the
programmed walking motions, and we
believe that enough fibers have grown
across to activate the CPG so that the
person can start and stop the CPG, but
not enough fibers have grown across
so that they can move their legs at will.
They can’t wiggle their toes, they can’t
straighten out their legs. But on the
other hand, once they start walking, the
CPG takes over and they can start and
stop and turn — useful walking.”
Young says he thinks the results raise
a very important question for future
studies to investigate.
“It really opens up the question
whether more therapies would work if
people actually trained [with intensive
locomotor training],” he says. “There are
a lot of studies of olfactory and sheathing
glial cells in China and studies of bone
marrow transplants, but none of these
studies have done any walking of the participant. And so it could very well be that
those therapies could have worked if they
had walked the participant.”
Young says an ongoing trial in China
is looking at whether the UCBMNC are
even needed. Participants in that study
will receive six months of the intensive
walking regimen but no cell transplants.
THE FUTURE OF
CLINICAL TRIALS IN
THE UNITED STATES
As excited as Young is about the results,
he seems even more excited about launching similar trials here in the United States
as part of a multi-center, worldwide effort. In addition to China and the U.S.,
trials would occur in Norway and India.
His team met with the FDA in January to
review the U.S. proposal and came away
with an agreement about how to proceed.
With the money already raised,
Young hopes that his team could begin
phase two trials in the U.S. by the end of
the year. Multi-center phase three trials
would be launched around a year later,
possibly before the end of 2017.
“So we are estimating that probably
the phase three trial will require about
120 patients,” says Young. “We need to
do two of them … one, which we want
to do with the U.S., Norway, and India,
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“
The thing that’s holding us back is for every one of
these trials, we have to raise the money — it’s not
a trivial amount. We have to raise about $60 billion
for the trials. And this is not being helped by any
company or by the government. Right now, all the
clinical trials are going on overseas.
the trials. And this is not being helped
by any company or by the government,”
he says. “Right now, all the clinical trials
are going on overseas. In the U.S., there’s
zero help for the clinical trials to go forward.” Young has made the case for increased funding for SCI research all over
America, including the halls of Congress,
and hopes a successful U.S. trial will help
turn the tide of public opinion.
“We’re going to try our very best to
“
and then a second one that we’ll do all in
China. [Another] 120. So it will be a total of 240 participants. And it will be the
same one-year long trial. We may find
out things from the phase two trial that
may change the plan. But we’re hoping
that our phase two trials will show that
the walking is beneficial.”
One issue Young is working on is shortening the amount of locomotor training
required. “6-6-6 is scaring everybody in
the U.S.! … To walk somebody six hours
a day, six days a week for six months is a
multi-million dollar therapy,” he says. “So
we are trying to develop ways, including
stimulation, [with] which we can shorten
this time.” Young didn’t delve into specifics
about what types of stimulation his team
was looking at, but he expressed admiration and interest in the work of Dr. Susan
Harkema and Dr. Reggie Edgerton, leading researchers in epidural stimulation.
Even more than the time demands,
the cost of trials could be prohibitive.
“The thing that’s holding us back is for
every one of these trials, we have to raise
the money — it’s not a trivial amount.
We have to raise about $60 billion for
make these trials go ahead and convince
people that they’re being done properly,”
he says. “We want to make sure we do
this right. And as soon as that happens,
I’m hoping that there will be many clinical trials. Not just our clinical trials. But
there will be maybe half a dozen or a dozen clinical trials going on simultaneously
around the world. People will get excited.
It’s just like how the first AIDS therapy
triggered a dozen other therapies.”
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Medical
MARIJUANA
2.0
—Stirring the Pot
B Y
M A R K
M A T H E W
T
he War on Drugs is losing, and pot is winning. And
people who use medical marijuana are winning the
right to choose. All of Canada, most of Western Europe,
and half of the states of the United States have legalized medical marijuana. Its expanded use, growing support for
legalizing its use, further innovation in its safe use, and deepening research into why to use it — all herald an upgrade to
Medical Marijuana 2.0.
Trailblazers
and Troublemakers
In 1996, the tide turned in the War on some Drugs when California voters legalized medical marijuana. Since then, citizens
have joined crusades in other states by testifying about their
own medicinal, though illegal, use of cannabis. Wheelchair users have often very visibly led the marijuana march. If you research the online archives of public hearings for bills legalizing
medical marijuana in your own state, you are sure to find testimonies from wheelers with MS and SCI among them. Rather
than simply light up and shut up, wheelers have chosen to light
a fire to drug law reform.
Many unsung heroes preceded, and therefore have eluded,
24
NEW MOBILITY
B R A U N S T E I N
the reach of the internet. Our nation’s earliest documented
medical marijuana users gave testimony at hearings before the
U.S. Drug Enforcement Administration from 1986 to 1988.
Valerie Cover of California, Martha Hirsch of Massachusetts,
and Greg Paufler of New York, all living with MS, testified to
their cannabis “crimes.” Two quadriplegics bravely joined that
chorus. G. Fred McBee of Florida, while horseback riding, fell
off his horse and then the horse fell on him. But due to his
subsequent use of cannabis rather than opioid-based painkillers, McBee never fell off the wagon. David Branstetter of Missouri was arrested and threatened with incarceration unless he
ceased confessing about his use of cannabis to his parole officer. Yet Branstetter traveled to Washington, D.C., to sit before
the DEA to confess still more.
The 1980s and early 90s were dark times for cannabis consumers. Those who pushed the envelope did so at risk of that
envelope containing warrants for their arrests. Nowadays, we
easily forget the risk ever existed. Yet even where it is legal, social stigma may hang in the air. (Such stigma may explain why,
despite multiple calls for submissions, so few cannabis users
with SCI or MS were willing to share their stories here.)
The Grim Wheeler has led many people down wheelchair
paths they would never have explored on foot. Only after
their SCIs did Ethan Ruby and Dr. Gary Witman allow their
lives to “go to pot.”
Photos by Matt Wong
The Pot Doc
To some people’s thinking, doctors are super-humans who never fall ill, never suffer injuries, and never die within our own
lifetimes. In reality, even doctors have doctors, and doctors do
become patients. Gary Witman, M.D., was head of emergency
care at a Massachusetts hospital when in a cruel role reversal
he was ambulanced to the ER of a Rhode Island hospital. He
had been enjoying a summer day wading in the ocean when a
Dr. Gary Witman says he has not found anything superior to marijuana
for treating pain or neuropathy.
rogue wave knocked him down and flipped him on his head. He
fractured several upper vertebrae and injured his spinal cord at
C3-4, leaving him paralyzed below the chest and with limited
use of his hands.
Witman recounts this story from six years ago while seated
in his power chair. He speaks eloquently and deliberately, as
might a doctor sharing an unwelcomed diagnosis with his ailing patient, except that he is the patient about whom he speaks.
“At the time of my injury,” he says, “I was immediately fired.” So
he took fate into his own hands.
For the next five years, Witman sought but was unable to
obtain employment, not even with the VA. Everyone told him
he was eminently qualified but too disabled. Finally, a year ago
he secured a full-time position with Canna Care Docs. He treats
Massachusetts and Rhode Island residents to evaluate whether
their conditions might qualify them for state permits to medicate with cannabis. If so, he advises dosage and usage. He dismisses the honorific (or onerous) nickname “pot doc.” Anyhow,
no one has ever called him that. He counters, “It is my belief that
to appropriately recommend this medicine requires a physician
who specializes in either pharmacology or internal medicine,
and who understands the risks as well as the benefits.”
About cannabis’ benefits, he says, “I have not found anything
superior for the treatment of either pain or neuropathy, and it is
far superior to the utilization of narcotics.” While more than a
thousand strains of cannabis have been cultivated, the six dispensaries in Massachusetts currently offer hardly more than 33.
Among those, Witman recommends two specific strains that
J U LY 2 0 1 6
25
most effectively alleviate spasms, Purple Haze and Sour Diesel (more about Sour Diesel later). “Most people get the greatest
benefit for spasms from CBDs.” And those two strains have the
highest ratios of CBD. He adds, “My patients are not looking for
THC.” (See sidebar, next page.)
Witman’s recommended modes of delivery are marijuana
edibles (medibles) and vaping, but not smoking. “I do not believe that there is any indication for smoking.” He says that vaping releases all the medicinal cannabinoid compounds at below
400 degrees F (204 C), whereas smoking above that threshold
produces tar and ash, both proven carcinogens.
Eight percent of the people he sees have SCI and 4 percent
have MS. While everyone responds differently, Witman does
outline one generalized protocol for those with MS or SCI. “I
recommend they use a vaporized sativa strain, two to three
puffs, to be administered every three to four hours, during the
day. Nighttime, edibles are to be administered one hour prior to
sleep, to take as required to get seven hours of continuous sleep.”
He voices concerns about legalizing recreational pot because
that might lead to increased risk of cancer for those who smoke
tobacco and to more traffic accidents by those who mix pot with
alcohol. Further, the purity and potency of medical cannabis
might be compromised if growers redirect their efforts to the
recreational market by growing strains with higher THC. That
in turn might detract from cannabis being taken seriously as a
pharmaceutical agent.
Had he ever used marijuana recreationally as a youth? He
answers frankly, “I certainly have.” Oddly enough, he does not
presently use cannabis because he says he has none of the indications which cannabis might medicate. He leaves his spasms
untreated. And with no sensation below the chest, his pains
from spasms go unnoticed.
But Witman has not gone unnoticed. He is president of the
“I recommend they use a vaporized
sativa strain, two to three puffs, to be
administered every three to four hours,
during the day. Nighttime, edibles are to
be administered one hour prior to sleep,
to take as required to get seven hours.“
Rhode Island chapter of United Spinal Association, and serves
on several state government agencies and committees. He
awakens every morning with an urgent desire to serve and to
care. “Every day is such a beautiful experience,” he says. “The
ability to be alive is spectacular.”
26
NEW MOBILITY
A card-carrying member of the medical marijuana community, Ethan
Ruby is also CEO of Theraplant, which makes the medicine.
The CEO of CBD
Ten years ago, if you had told Ethan Ruby that he was destined
to become an herb farmer, he would have wondered what herb
you’d been smoking.
His circuitous route to running a huge indoor herb farm began 16 years ago when a typically aggressive Manhattan driver
ran a red light, rammed a car, and that car in turn struck Ruby
on a crosswalk. The last domino to fall in that effect was Ruby’s
T6 vertebra. At that time in New York City, pedestrian traffic
signals commanded in bold letters and in plain English either
WALK or DONT WALK (no apostrophe). When he crossed
that fateful street corner, Ruby’s traffic signal read WALK.
Now, rather than walk, Ruby has kept busy doing many
other things. Formerly a star sports athlete and equities trader,
he turned to another form of gambling post-paraplegia. Seated
in his cool new wheelchair, he rolled up to the poker table and
competed on a level playing field where all the other players
were seated, too. He even ascended to the world series of poker
tournaments. Then he founded Poker4Life, which hosts poker
tournaments to fundraise for nonprofits, including for the Buoniconti Fund, a fundraising arm of the Miami Project to Cure
Paralysis. He also invented and patented Wheel Comfort padded footplates for wheelchair users who like to roll barefoot.
Other business and charitable ventures preceded and followed,
but now his attention centers around medical marijuana.
As an inveterate entrepreneur, Ruby foresaw cannabis as
an emerging industry. When Connecticut legalized medical
marijuana in 2013, he competed with 15 other applicants for the
state’s four costly producer permits. Applicants were rated and
Ruby’s company scored highest. Theraplant was born, and Ruby
became its CEO.
A Plant Pharmaceutical Plant
On Google or Bing Maps, aerial views of Theraplant’s pharmaceutical plant look hardly different from its neighboring
industrial plants. Those include a plastics factory, a computer
components maker whose computer business model is probably making plans for its move to China, an adhesive manufacturer that is still sticking around, several tool and metalwork
machine shops, and FedEx and UPS competing distribution
depots. But those online aerial views of the former paint factory
are several years old. Today, Theraplant has transformed that
1.5 acre factory and 10 acre property into a Fort Knox. The State
of Connecticut mandates that.
“Connecticut was the first state that was really treating cannabis like a pharmaceutical,” explains Ruby, “so that’s why I felt
comfortable getting involved with the industry here.”
Industry indeed. Ten years ago, people with disabilities and
caregivers rhapsodized in blogs and newsletters about the med-
ical marijuana community. Now, cultivation laboratories and
dispensaries tabulate in spreadsheets and annual reports about
the medical marijuana industry. The sense of community may
be waning, but safety, purity, and yes, even potency, are gaining. We all can legally brew beer in our garages or make wine
in our cellars, but instead we pay breweries and vintners to get
all messy for us. “To make medicine that passes the very strict
laboratory testing here,” says Ruby, “we spend millions of dollars on environmental controls.”
Ruby credits demand with guiding grow lab supply. “Originally, customers were chasing THC. But as they become more
educated in understanding terpene profiles and the benefits of
other cannabinoids, they are starting to demand more CBDbased medications. And more people are demanding indica
blends than sativa blends. When we first started it was 80 percent flower, 20 percent everything else, including edibles, capsules, waxes, vape oils, extracts. Now it’s 60 percent flower. And
more people are vaping oils or wax rather than flowers.”
Unlike Witman, Ruby is a card-carrying member of the
medical marijuana community. “Yes, I purchase my monthly
supply of medicine at a dispensary just like any other patient in
Connecticut. I use various forms of medical cannabis to treat
different ailments. Due to SCI, I suffer from pain, PTSD, skin
breakdowns, intestinal distress, to name a few. Cannabis provides a safe and natural treatment option. Typically, I use CBDdominant strains as they provide relief without the ‘high’ effect
associated with THC strains. I prefer indica-dominant strains
at night to help relax my body and lessen the pain. This relief
The ABCs of THC and CBD
The tiresome, old question, “Does
marijuana really work?” has been supplanted by “What strains work best?”
The two most widely cultivated
species of cannabis are Cannabis indica and Cannabis sativa. Ethnobotanists debate the differences between
the two, while cannabis consumers
agree at least that each produces
different effects. Sativa has traditionally been a stimulant and intoxicant,
producing a head high that is uplifting and cerebral, and is best suited
for day use. Indica has been more
of a sedative and analgesic, producing a body buzz that is calming and
sensual, and best for night use.
Cannabinoids contain the psychoactive and medicinal components of
cannabis. While 80 different cannabinoids have been identified (with
more on the way), the two that get
the most press are THC (tetrahydrocannabinol) and CBD (cannabidiol).
Initially sativas had a richer THC content than did indicas, while indicas
were higher in CBD than were sativas. Cross-breeding has since blurred
those boundaries and produced a
wide variety of hybrids, each strain
with distinct characteristics that have
been described by wildly imaginative names, for instance Purple Haze
and Sour Diesel. “Strains” is a colloquial term for “cultivars,” variations
within a species that exhibit different
appearances and properties. Thus
Honey Crisp apples are cultivars
good for eating raw, while Cortland
apples are more suitable for baking.
During the past half century, the
THC contents of both sativas and
indicas have increased tenfold, thanks
to intense efforts at hybridization. It’s
not your mother’s marijuana anymore.
Yet stoners do not get any higher, they
just get to the same place with less
huffing and puffing. When growers
hybridized strains with higher levels
of THC, they unwittingly bred out the
CBD. As CBD provides relief to many
medical conditions such as spasms and
pain, its lowered potency was a loss
to medical users and accounted for
mixed results in past human trials. But
all was not lost because THC, too, has
antispasmodic properties. Plus THC
and CBD enhance each other’s effects
so are best consumed together.
With cannabis’ medicalization,
growers have cultivated higher levels
of CBD back into strains that dispensaries now provide to medical marijuana card-holders. The new math
of medicinal marijuana has opened
new horizons. As a muscle relaxant,
antispasmodic, and analgesic agent,
CBD has stimulated long overdue interest from SCI, MS, and ALS medical
researchers. Stay tuned as discoveries advance rapidly regarding the
ABC’s of THC and CBD.
J U LY 2 0 1 6
27
Photo by Monique Chevalier
Fournier registered with Connecticut’s medical marijuana
program upon its inauguration in 2012. Until the dispensaries
first began dispensing two years later, he procured his cannabis
clandestinely from “the street,” same as everyone else did. Now
he purchases all his herbal meds from the dispensaries and is
appreciative of the many strains they offer. He seeks those high
in CBD, which quells spasms and tone the best. His favorite
CBD strain is Sour Diesel. For day use, he prefers to partake
in cannabis via oil syringes and vape pens. For night use, he
consumes medibles just before going to sleep. Unbeknownst
to Fournier, he follows the very regimen and prefers the same
strain as recommended by Witman.
Fournier welcomes full legalization for recreational use because he happens to enjoy one of cannabis’s side effects, namely
euphoria, and believes everyone else deserves the choice to be
appropriately medicated, too. Did he use cannabis recreationally before using it medicinally? “Absolutely!”
Alex
Proponents say that Bud Rub, a topical salve, relieves aches and pain
with no psychotropic side effects.
allows me to eat and achieve restful sleep. My preferred delivery
method is vaporization.”
What Forms of Medicinal
Marijuana Do People Use?
Despite Connecticut’s very rigorous criteria for qualifying a
recipient of medical marijuana, enrollment in its four-year-old
program has tripled in the past two years. “This speaks for the
positive impact this medicine is having,” says Ruby. “More and
more doctors are looking at the literature and listening to their
patients.” Here are usage protocols from three of them.
Alex lives in the dim twilight between state and federal laws, so
he wishes to remain anonymous. Medicinal cannabis is fully
legal in his home state, but he is employed full time by a federal agency, and under federal law cannabis is still banned as
a Schedule I drug. If he publically confessed his “crimes,” he
could risk losing his job. Ironically, as a mental health professional, one of his duties is drug counseling.
In 2004, Alex severed his spinal cord at T5 in a motorbike
crash. When he was in the rehab ward, his friends smuggled
in cannabis medibles for him. From his earliest days as a paraplegic, he was aware of cannabis’ therapeutic value. He moved
in 2006 to the state in which he presently resides and the next
year enrolled in its cannabis program. But because of the threat
posed by the feds, Alex continues to smuggle his stash into his
own home.
He medicates to alleviate the extreme spasticity and stiffness
(tone) in his legs and to quell the accompanying pain. Cannabis helps a lot but not enough, so during the day, for spasms
Tim Fournier was a 19-year-old sailor in the Navy when a freak
accident recruited him into the ranks of SCI. While C6-7 quadriplegia took the wind out of his sails, it did not sink him. He
has navigated the sometimes choppy seas of quadriplegia for
30 years now. Though lacking dexterity in his fingers, he uses
a manual wheelchair, only recently upgrading it with powerassist. A salesperson for an automotive company that outfits
vans for the disability community, Fournier is also the VP of
the Connecticut chapter of United Spinal Association.
His muscle spasms and tone are so severe that to treat them
he had administered Baclofen both orally from pills and internally from a pump implant. Cannabis now enables him to
eliminate his oral use of Baclofen, yet the herb has not provided
a total panacea. Occasionally he still switches on the pump,
though more dialed down than before. Because of cannabis, he
need not resort to any pharmaceutical painkillers.
28
NEW MOBILITY
Photo by Monique Chevalier
Tim Fournier
Medicinal marijuana is, well, medicine. As such, it can come in capsules to
enhance time-released pain relief.
he supplements with oral Baclofen. Before his use of cannabis,
his daily regimen of Baclofen was 120mg. Cannabis has enabled
him to reduce that dosage to half and to eliminate usage of all
other pharmaceutical drugs.
Preferring strains high in CBD, he seeks Sour Diesel (again
Sour Diesel!) and ACDC, always organically grown. The owner
of his dispensary personally assures Alex of its organic origin,
as the USDA does not certify organic cannabis. Alex’s usual
methods of delivery are medibles and smoking. He smokes
either pipes or joints. In light of innovations with vaporizing,
smoking may be nostalgic, as he smoked pot as a teenager. Then
he abstained during 12 years in the military. As though making
up for lost time, he insists, “I enjoy the psychoactive properties,
but not when I’m at my workplace.”
Since his motorcycle accident, if his life were a book, Alex
might title it, Zen and the Art of Wheelchair Maintenance.
Above all, he values human relationships as a manifestation
that we all are intimately connected. And he believes that medical marijuana is equally connected to recreational pot. “I love
the fact that people have the good sense to make it legal both
medically and recreationally.”
Paula Ghergia
Formerly a UPI photojournalist, Paula Ghergia of Somerville,
Massachusetts, juggles three new jobs. Part-time, she is employed at a café. Double-time, she serves as the primary care-
giver for her 89-year-old mother who has dementia. And fulltime, she manages her MS, which was diagnosed six years ago.
While she has not yet reached the stage of impaired mobility,
she suffers constant fatigue and periodic spasms and pain.
When Paula tried pot as a teenager, it only made her feel silly,
so she quickly lost interest in it. Now in her early 50s, she enlisted
in Massachusetts’ medical program nearly two years ago. She
says cannabis quells the spasms, alleviates the pain, and no longer
makes her feel silly. In fact, it now enables her to feel quite normal.
She prefers cannabis in its natural form as a wholesome herb,
which she either vapes or smokes. In the morning, she imbibes
in strains high in THC to give her a lift before going off to work,
while in the evening she prefers CBD strains to relax her fatigued muscles and to impart more restful sleep.
Until a dispensary opens near to her, Paula procures her supply from a legal grower who delivers right to her home. She does
not grow her own because she is too busy with her jobs. And no
shady drug deals in dark alleys or parking lots. She is thankful to
Massachusetts for its medical cannabis program, and supports
efforts to legalize its recreational use, which she thinks will further legitimize and stabilize its medical use. Her advice to medical and recreational users alike: “Be safe and be smart.”
Medical Marijuana 3.0
All drugs pose risks. Whether medicinal or recreational, herbal
or pharmaceutical, legal or illicit, every drug harbors undesir-
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We Live in a Medicinal World
Future generations of Americans will find it incomprehensible
that cannabis was briefly illegal in the United States, a blink of
the eye compared to the millennia that the weed has flourished
Using oral tinctures or vaporizers is generally
considered safer than smoking marijuana.
30
NEW MOBILITY
on the planet. In 1937 when it was first banned, the AMA protested that it wanted to keep the herb in its cornucopia of drugs
in order to retain doctors’ options and patients’ choices.
Freedom is synonymous with choice. Prohibitionists denounce efforts to legalize any medicinal use of cannabis as
mere ploys to eventually legalize its recreational use. Guilty as
charged. Drug law reformers indeed view medical marijuana
as a wedge issue, as the foot in the door. Without the funding
and lobbying efforts from NORML, MPP, and Drug Policy Alliance, medical marijuana’s legal status would still be stuck in the
20th century. Medicinal users who may have been their stooges
nevertheless have gained from its legalization.
Even prohibitionist legislators who have voted against it
stand to gain from further legalization of medical marijuana.
While they will not very likely suffer SCI or contract MS, many
of them indeed will be afflicted by and die from cancer. And
when they undergo chemotherapy, they will be thankful when
given the option of using cannabis to quell their nausea and to
ease their pain.
In a sense, we are all patients. What line can be drawn between the terminally ill who will die in a month or a year and
the rest of us who will die in 10 years or 50? It is a fact of life
that we all get sick, and that if we grow old enough, we all will
become disabled, and that young or old, we all will die.
Resources
The legal status of cannabis is rapidly evolving, so it is best to
consult your own state government’s medical marijuana program for policy updates. Meanwhile, two websites provide useful overviews.
• National Organization for the Reform of Marijuana Laws
(NORML), norml.org/legal/medical-marijuana-2
• Marijuana Policy Project, www.mpp.org/states
Photo by Monique Chevalier
able and potentially harmful side effects. Inhaling cannabis
smoke can compromise human health. While vaping bud is
widely acknowledged to be less harmful than smoking, vaping
still poses some health risks that varies with the brand of vaporizer. “Vaporization technology is still growing,” says Ruby, “and
is going to keep escalating.”
Due to the inherent dangers of smoking and even vaping,
many alternative methods of delivering cannabinoids now are
sold nationwide. These include oral sprays, alcohol tinctures,
topical creams (for psoriasis), transdermal patches, sublingual
strips, oil extracts, eye drops (for glaucoma), time-released
capsules, waxes, salves, and a whole smorgasbord of medibles.
“The future of the industry is heading toward extracts with
standardization of measurement and exact dosing,” says Ruby.
“And a whole new area of delivery is being affected by transdermal patches and creams.” Despite this treasure trove, most
recreational users still smoke or vape the bud because they are
banished from legal access to more healthful cannabis-derived
alternatives. (What’s wrong with this picture?)
Some ill or injured folks who still live under state prohibition
may wonder if cannabis might provide them with the relief they
seek. The short answer is that not everyone benefits from any
single drug, and no one drug benefits everyone. Hence the hundreds of prescription drugs and hundreds more non-prescription
drugs sold just to assuage pain. Everyone can gain by broadening
their choices and by weighing the risks posed by each choice. If
people choose cannabis, then as expanding research weeds out
all the myths, medicinal users will benefit further.
Legalized Marijuana
Expands in Oregon
Promise of Big Bucks Recreationally May Be Undermining Medical Pot
B Y
I A N
R U D E R
Photo by Monique Chevalier
T
hese days you can’t roll too far in
Portland, Oregon, without stumbling upon a marijuana dispensary. Medical marijuana has been
legal in Oregon since 1998, but since the
voters of Oregon overwhelmingly voted
to legalize recreational marijuana in November 2014, the industry has caught fire
faster than a perfectly rolled joint. With
a whopping 167 dispensaries within the
city limits, the green cross identifying the
businesses has become one of the city’s
most ubiquitous signs. With literally
thousands of people applying for licenses
to sell recreational marijuana statewide,
there are millions of dollars pouring into
the industry, and also into the state’s coffers — the state collected $3.48 million in
taxes in January 2016 alone, far surpassing its wildest estimates. It is easier than
ever before to get marijuana in Oregon.
So you can imagine Jeremy John Robbins’ surprise when he received a certified
letter from the owner of the farm that had
grown his medical marijuana, informing
him that he would no longer be able to
grow for him. The grower had decided
to focus on the burgeoning recreational
market and had to declare that he would
no longer grow medicinal marijuana.
Robbins, 40, has used medical marijuana since 2001 to reduce his spasms,
help his neurological pain and cope with
PTSD since he was paralyzed in 1999. He
swears by the benefits and has become a
staunch and well informed advocate for
making cannabis more available to the
public. Still, he was caught off guard by
the letter. “I didn’t see it coming,” he said.
“I thought legalization would increase
access, and it has, but that has come with
regulations and a lot of uncertainty.”
Oregon is one of only four states to
have legalized recreational marijuana,
For treating neurological pain, Jeremy John Robbins says nothing is better than medical marijuana.
but 25 states have legalized some sort of
medical marijuana, including 10 in the
last five years. As more and more states
evaluate legalizing marijuana, eyes are
on Oregon, Washington, Colorado and
Alaska to see how legalization plays out
and how medical and recreational programs work, or don’t work, side by side.
“I think a lot of people take it for
granted that marijuana is just going to be
there, but unfortunately I think that a lot
of medicinal users are going to be in for
a really rude awakening,” says Charley
Flynn, a Portland grower.
For Robbins, and some other long
time medicinal users, legalization has actually complicated his ability to procure
the medicine they need. Robbins is one
of thousands in Oregon with a medical
marijuana card. Cardholders are allowed
to have up to 24 ounces of usable marijua-
na. Many people simply buy their medicine tax-free at one of Oregon’s many
dispensaries, but some take advantage of
the law’s provision allowing cardholders
to have six plants. Cardholders can register to grow for themselves, but growing
medical quality product can be expensive
and difficult. For some, like Robbins, who
lives in public housing, it is not an option.
Instead, he had an agreement with his
registered grower where the grower would
provide him an ounce a month from his
six plants. With an ounce selling for anywhere from $200-$300 at a dispensary,
depending on the strain, the deal saved
Robbins significant money each month
and allowed the grower to recoup some
of the costs of growing by selling excess
product to dispensaries. When he found
out his grower was moving to the recreational market, Robbins was forced to
J U LY 2 0 1 6
31
find a new grower. He has, but has yet to
receive any medicine as the grower deals
with startup issues. That means Robbins
has to pay market prices for his medicine
on his already tight budget.
Like many medical users, Robbins
rarely ingests his allotment via smoking. He has found the most benefit from
concentrates, applying a small drop under the tongue. That too was thrown into
jeopardy earlier this year when the state
health authority’s draft regulations made
the manufacture or possession of concentrates a Class B felony. Revisions now
allow concentrate manufacturers or users
to apply for a permit, but the application
costs $4,000, again too steep for many.
Those changes are part of the state
health authority’s attempt to rein in an
industry that has gone largely unregulated since its inception. The majority of
the regulations are focused on health and
safety issues, like ensuring safe dosages
and uniform quality, but they extend to
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how grow sites are managed and issues
like security and water use.
Troy Moore has been involved with
the Oregon marijuana scene’s rapid
growth from the beginning. He started
the first state-licensed medical dispensary, Oregon’s Finest, in 2012, and is about
to open his third store. He also co-owns
Ideal Farms, a grow farm in a nondescript
building in downtown Portland that
grows medicinal marijuana for a number
of medicinal users. That will change later
this year or early next year once Moore
applies for a recreational growing permit
and ceases to grow medical cannabis.
“They’re forcing a lot of growers to make
a decision to be recreational or medical,” says Moore, citing the high cost of
mandated security equipment and other
regulations. “It’s tough to make money
in the medical market anyway, and these
are probably costs most small medical
growers cannot afford.”
The Lure of Recreational Growing
In Oregon, the decision to focus on
the recreational market instead of the
medical market makes obvious business sense. Medical growers are limited
to growing for four cardholders, with
each cardholder entitled to six plants.
Even with multiple growers working at
the same registered grow site, a frownedupon practice known as card stacking,
growers’ profits were limited. Recreational licenses are divided into two
tiers for indoor and outdoor production.
Indoors, a Tier I license allows for up to
5,000 square feet of canopy, while a Tier
II allows for 5,001-10,000 square feet.
Outdoors, Tier I allows for up to 20,000
square feet and Tier II allows for 20,00140,000 square feet. That’s up to about one
acre of outdoor ground, a lot more space
and a lot more potential revenue.
“I feel really disappointed in the direction that things are going,” says Flynn,
who grows for Moore’s Ideal Farms. “I
think that a lot of the voters were duped
by legislators saying they weren’t going to
touch medical, but by every indication,
the medical system is probably going to
get dismantled to the point where it’s going to be ineffective or force people into
Fifty-six percent of Oregonians voted for Measure 91 in 2014 to legalize
recreational marijuana. The law allows adults over 21 to possess up to 8
ounces of dried marijuana and to grow up to four plants per household.
The law allowed counties where 55 percent or more of voters opposed
the measure to ban marijuana sales. Fifteen counties in Oregon did so.
Legal sales of recreational marijuana began Oct. 15, 2015, but were limited to flowers and joints. Edibles and other delivery methods became
recreationally legal June 1, 2016.
the recreational.”
Moore isn’t as pessimistic, but he
does profess to be unsure of how medical and recreational marijuana will coexist. “They’re going to try to coexist in the
same building, which is hopeful, but they
keep changing the rules all the time, so
it’s hard to predict.”
One thing everyone seems to agree
on is that legalization has brought a lot of
new users into the fold, many of whom
now seem more open to exploring marijuana’s medicinal benefits. “More and
more people that have genuine medical issues are looking to it as relief for
those medical issues because the stigma
around it is not what it was,” says Moore.
“Are they people that would have joined
the medical system? No, but suddenly
they are on board and find relief and are
like, ‘Wow.’”
A visit to one of Oregon’s Finest dispensaries can be equally eye opening.
After showing your ID, visitors enter a
secure area that is both comfortable and
tasteful, where they can see and learn
about all of the different strains and
different delivery methods. They carry
patches, sprays, tinctures, rubs, massage
and body oils and a variety of deliciouslooking edibles ranging from gummy
candies to caramel corn to cake balls.
Everything is packaged with specific details on dosages and what is in it. There
are also shelves of labeled jars, flush with
well over 20 varieties of cannabis cov-
ering the spectrum of CBD and THC
content. There are attendants on hand to
answer any questions and help guide you
to the best products for your needs. The
whole experience is designed to remove
any discomfort from the buying process
for people who might have reservations,
and it works.
Robbins is hopeful that the increased
exposure to the medical benefits of marijuana will continue to grow the drug’s acceptance and in turn fuel more education
and research about its potential.
“Cannabis has been able to help me
in ways that more traditional drugs have
not, and I really think it can do the same
for other wheelchair users who struggle
with the same kind of issues I do,” he
says. “It’s time people start moving past
tired old conceptions to embrace its potential and improve their lives.”
Fun fact
Portland now has 167 marijuana dispensaries overseen by the state and only 33
state-run liquor stores.
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June 23-25, 2017
SPOTLIGHT: HUDSON VALLEY
PLACES TO GO
Whether you were a hippie, you love music or you just want to have a good time,
don’t miss the Bethel Woods Center for
the Arts. Located on the famed grounds
MUST SEE, MUST DO
Walkway Over the Hudson: A nonprofit transformed the abandoned
Poughkeepsie-Highland Railroad
Bridge into a beautiful state park and
what is now the best way to handcycle,
walk or roll across the Hudson River.
You can’t beat the views or the access.
Shopping: If you’re done with the arts
and culture, or just want to shop ‘til
you drop, the Palisades Center has
you covered. The country’s eighth
largest mall also has a number of
good restaurants. Another great local
option is Woodbury Commons Premium Outlets, one of the country’s
largest outlet centers. The sprawling
center is fully accessible and features
just about every major shop you
could want.
SKINNY ON THE AREA
You’ll hardly believe you’re only 50 miles away from America’s biggest, most urban city
when you visit New York’s Hudson Valley. I’ve lived in the region my whole life, for the
last 13 years as a wheelchair user, and have grown to appreciate the bounty of nature
and beautiful, accessible recreational opportunities.
Photo by Ziggi Landsman
MY TAKE
The Hudson Valley is blessed with a number of wonderful state parks, but there are
two that really stand out for the breadth
of their accessible options: Harriman
State Park and Bear Mountain State Park.
The two parks are located less than seven
miles from each other and are bound to
offer something you’ll enjoy.
Harriman State Park has 31 lakes and
reservoirs and a number of accessible options on the water, including fishing and
kayaking. Bear Mountain State Park also
offers lots of water recreation, including
accessible boat rentals.
One of my favorite things to do is take a
picnic to Bear Mountain and make a day of
it with my family. There’s a great zoo that
is accessible, a newly renovated lodge and
plenty to keep the kids entertained while
the adults relax. While you’re there, don’t
miss the breathtaking views of the Hudson
Valley from the many scenic viewpoints.
BY MATTHEW CASTELLUCCIO
Learn
about the
Hudson Valley
Chapter on
next page
This Walkway over the
Hudson is iconic of the
Hudson Valley.
where Woodstock took place in 1969,
Bethel Woods has transformed the once
farmland area into a wonderful nonprofit
performing arts center and museum with
great, regularly scheduled concerts and
lots of history without destroying the vibe
that helped draw so many people almost
50 years ago.
They’ve made a real effort to make
everything accessible, as seen in the solid seating options at the amphitheater,
the accessible shuttle that can take you
around the sprawling grounds in your
wheelchair and well-marked accessible
pathways. To top it off, the events are usually reasonably priced, so you don’t have
to break the bank.
If you’re looking for good food and
wine, you may want to check out the Culinary Institute of America, in Hyde Park,
New York, or one of the Valley’s many
wineries. There are a number of restaurants on the culinary institute campus
offering high end cuisine, and you will
save a few bucks since the students and
staff are also the chefs. The Valley’s wineries aren’t always fully accessible, but
I’ve found the proprietors are very willing to accommodate wheelchair users
and make it a great experience.
AVAILABLE HEALTH CARE
Helen Hayes Hospital in Haverstraw,
New York, is the biggest and best rehab
option in the area. With 155 beds, the
hospital draws from a huge swath of New
York. Thanks to a long history as one of
America’s earliest rehab hospitals, Helen
Hayes has developed many beneficial programs for both inpatients and community members. I oversee our adaptive sports
program which has year-round offerings
in 17 sports (see Chapter Check In, next
page). The hospital also offers peer mentoring and support groups.
GETTING AROUND
There are some accessible cabs in the
area and even visitors can arrange for
paratransit, but if you really want to get
around and see the Valley, you’re probably
better off renting a vehicle. Metro North
Railroad does have some accessible stations, making it relatively easy to hop a
train and head into New York City should
you desire. There are also accessible buses
you can use to explore the region.
J U LY 2 0 1 6
35
Chapter Check-In
Hudson Valley Chapter: Instilling HOPE
T
he first two steps for almost any successful chapter are to develop and fully
embrace a mission and then to figure
out how to serve that mission. The Hudson
Valley Chapter of United Spinal devised a
great mission (with an even cooler acronym)
— H.O.P.E — Health and wellness after SCI;
Opportunity to fulfill goals and dreams; Peer
support; Empowering individuals to achieve
independence. Now they are working on
fundraising to support an exciting new event
to bring that mission to life.
That event is tentatively titled the Spinal
Cord Injury Empowerment Weekend Retreat,
and would consist of a three-day retreat on
Handcycling is one of 17 sports offered.
the campus of Helen Hayes Hospital in West
Haverstraw, New York, where members of
the local SCI community would receive a
comprehensive, education-filled overview of
helpful topics and local resources.
The chapter’s board is creating a survey
to seek members’ input on what specifically
should be focused on and offered. Chapter
President Matthew Castelluccio tossed out
the following ideas: a keynote speaker on SCI
research, panels on sexuality, and a dinner
dance with local adaptive dancers.
“We’d invite individuals here for a threeday weekend where they’d be exposed to
adaptive sports, lectures on research, seminars on wound care prevention, bladder management, equipment maintenance and more.
They’d get the opportunity to stay here or at
an area hotel and we would provide assistance for them,” explains Castelluccio. “It’d
be a full experience for them. For many it’d
be the first time out of their house, so that’d
be a whole new experience. We want to give
them a foundation of knowledge and experience to help them better adjust to their lives.”
Castelluccio, who has a C6 incomplete
and T6 complete injury, says the chapter has
been developing the idea since soon after its
inception almost two years ago, and it is hoping to hold the event next spring or summer.
He has done similar empowerment weekends
with other organizations and thinks the
chapter is uniquely positioned to have a big
impact on attendees.
“Living with a disability myself, I try to
think about where in my life there have been
things I would have liked to know more about
and things that would have been beneficial
to me,” he says. “The retreat is a way to help
individuals get those things.”
Castelluccio says the retreat will be open
to people from all over the area, with around
11 openings to start with, depending on
how much money the chapter can raise. The
chapter is holding two major fundraisers this
summer to support the event: a June 9 all-
The Hudson Valley Chapter’s robust adaptive sports program builds community.
36
NEW MOBILITY
Helen Hayes Rehab offered an adaptive baseball
workshop this past June.
inclusive Zumba-thon; and a July 10 music
festival at a local winery, featuring tastings, a
raffle and more.
Beyond the Retreat
When he’s not helping plan the retreat,
Castelluccio works as the adaptive sports
and peer mentor coordinator for Helen Hayes
Hospital. He grew up in the area, was injured
in a motorcycle accident just miles from the
hospital and rehabbed there, making him a
natural fit for the position when it became
available. He oversees a robust adaptive
sports program in his dual roles with the
hospital and chapter. With year-round offerings in 17 sports, including sailing, kayaking,
skiing, waterskiing, yoga, bowling and much
more, there is always something going on.
Seeing people respond to the activities has
been rewarding for Castelluccio.
“It’s been a great bridge to connecting
with people and helping them connect with
each other,” he says. “It’s amazing to see how
some people who are not that into a support
group environment react. When they come
to a recreational activity that they enjoy, it
develops into a support environment.”
With members located as far as six hours
away, developing support communities where
everyone can participate and feel comfortable
can be a challenge. “We have to be a little more
creative because our members don’t always
have access to get down here for our meetings.” One solution Castelluccio has utilized
is Skype, videoconferencing long-distance
members into the chapter’s monthly meetings.
“Our goal is to merge our two communities –
inpatients and community members – so that
the inpatients can learn from the community
members. Skype is one way to do that.”
Find out more about the Hudson Valley
Chapter at www.unitedspinalhudsonvalley.org
or call 845/786-4590.
News
South Carolina: A Whole New Feat … On Their Feet
Shouts of congratulations and waves of applause could be heard along the entire race
route from runners and spectators alike as
Marka Danielle Rodgers and Adam Gorlitsky
walked in the 10k/6.2 mile Cooper River
Bridge Run April 2 in Charleston, South Carolina. The unique reason for all of the support is
that both of them have spinal cord injuries.
Rodgers, a C3-7 incomplete quad and an
active member of the South Carolina Spinal
Cord Injury Association, walked the bridge
using E-MAG Active Stance Control knee,
foot and ankle orthotic braces while Gorlitsky, a T9 complete para, used the ReWalk
Exoskeleton. Neither of them had participated
in the race before and figured this was as
good a time as any to take on the challenge.
They were the first people with SCI to
walk in the Bridge Run, ascending up the
steep incline of the bridge and crossing the
finish line with nearly 35,000 other participants – all while dodging early-morning
raindrops. The two promoted their progress
through social media campaigns and created
T-shirts with the slogans “Purple Legs Up”
and “I Got Legs,” respectively.
Purple Legs Up
Rodgers’ purple E-MAG Active Stance
Control braces are not considered an exoskeleton, but are braces that can bend at the
knee thanks to technology that uses sensors,
gyroscopes and magnets. Crutches provide
assistance while she is able to balance and
walk with a natural gait. “As I step forward,
I sense the vibration under my arms through
the latissimi dorsi muscles and my ribcage,”
Rodgers said, adding, “The vibration is how I
know the crutch has hit the floor. That feedback tells me where I am in space.”
The 59-year-old Rodgers was classically
trained as a ballet dancer before her injury and
continues to teach and live by the ballet lifestyle. She said body awareness is so important.
“You learn to understand what you can feel
and how to use that for what you can’t feel.”
While working with therapists, Rodgers
learned to balance herself using the Nintendo
Wii Fit and balance board. Standing with a
walker, she is able to do weight shifts and
other exercises, and has created the same setup in her home.
The ReWalk is a mash-up
between Ironman and Terminator, says Adam Gorlitsky.
I Got Legs
Working out in the gym is part
of Gorlitsky’s ReWalk exoskeleton training. The 29-year-old
appreciates lifting up on the
pull-up bar and shooting hoops
while standing. He describes
his exoskeleton as a mash-up
between Ironman and Terminator. To get into the “suit,” Gorlitsky transfers from his manual
chair into the device by strapping braces to his legs. With a
battery pack on his back and a
watch-like device on his wrist,
he presses a button to stand up,
while another button activates
the walking mode.
Gorlitsky guides himself
using crutches, driving his hips
forward. Sensors in the device
measure the weight shift and
kick in a motor to help move his
legs. The former high school
basketball player said, “Having
the option to walk is an amazing
feeling, and I feel a little more
secure in my manhood.”
Sensors in the E-MAG allow Marka Danielle Rodgers to to have better lower body awareness.
Similar to how this technology supports
them while they walk, Rodgers and Gorlitsky had a team of supporters who stood
with them along the way, including physical
therapists from Roper Rehabilitation Hospital
in Charleston. Physical therapist Kyle Cooper
said both of them are hardworking individuals; they have the determination to accomplish what they’ve set out to achieve. Cooper
appreciated when Rodgers was looking for
additional challenges, and they would think
outside of the box for new exercises. One idea
included a trial run on the bridge’s pedestrian
walkway weeks before race day, which she
successfully completed.
Susan Newman, a faculty member who
does spinal cord injury research at the Medical University of South Carolina’s College of
Nursing, said, “Marka is one of the most hard
working, determined people I have ever met.
I never doubted for one minute that she would
complete the bridge walk.”
Gorlitsky’s team included ReWalk’s CEO
Larry Jasinski and a technician from the
company. Friends and family also walked
with him on the bridge. Noting Gorlitsky’s
determination, “You have to be stronger than
the average person to do this,” said Bridge
Run director Julian Smith in a news article.
Completing the Bridge Run was a personal goal for the duo, but they also wanted
to promote awareness to insurance companies — which do not cover these devices
— showing this technology is beneficial
to people with spinal cord injury to help
improve their quality of life.
— Alex Jackson
J U LY 2 0 1 6
37
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“YES
“
LEARNING
TO SAY
My Journey from SCI to a New Life
Over the first couple of years post-injury,
I underwent an attitudinal shift that
is continuing to this day. It is as if my
wheels have set me free to think and
be in the world in new ways.
I
B Y
S T E V E
am 14 years post-injury now, but I can honestly say that at
five years post I had a better life after my accident than I did
before it. Living with a T4 spinal cord injury made me do
things I never would have in the course of my ordinary life.
I have a circle of friends and colleagues that I would not have
come into contact with were it not for my course-altering SCI.
I began to live differently after my injury, and it wasn’t just
that I was now living with a disability. Over the first couple of
years post-injury, I underwent an attitudinal shift that is continuing to this day. It as if my wheels had set me free to think
and be in the world in new ways.
About three months after going home from rehab at Santa Clara Valley Medical Center, my mom, who was staying
nearby to help my then-wife, Tracy, and I with all of the post-
D A L T O N
injury transitions, came to our house and said, “My friend
just told me about a kayak program in Sausalito that can accommodate wheelchairs. Do you want to try it with me?” I
thought to myself, “I never really wanted to kayak.” Then, a
comment made by an SCI peer named Kirk came to mind.
He had said, “My spinal cord injury has taught me to say ‘yes’
more.” So I said yes to Mom.
Following the kayak outing with my mom, I tried more and
more adaptive sports. Over the next couple of years, I went
water skiing, downhill mountain biking (also known as four
cross), and snow skiing, along with trying the more traditional court sports of basketball, tennis, and murderball (rugby).
On a rec therapy outing to a National Wheelchair Basketball
Association tournament, one of the Denver players had said
J U LY 2 0 1 6
39
Above: Flying a glider is an example of an activity Dalton
probably would never have tried before his injury.
Left: Using a wheelchair is no obstacle to enjoying a hike over
rugged terrain. It just takes practice, all-terrain tires, acceptance that falls may happen, and the willingness to try.
to me, “I really learned
how to use a chair
when I started playing
basketball.” He told me
he was five years postinjury before playing
basketball. His words
stuck with me as each
adaptive sport I tried
made me more familiar with my “new”
body — teaching me
new transfer skills
when getting into the
varied equipment, or
The author married his second wife, Sydgiving me a greater
ney, in 2010, and they couldn’t be happier.
mastery of my balance
and agility as I learned to execute the moves each sport required.
These adventures built my confidence as well. The Tahoe
Adaptive Ski School, now Achieve Tahoe, had a banner in their
ski hut that read, “If I can do this, I can do anything!” And into
my second year as a para I really began to believe that for myself.
But my relationship with Tracy, which had been a struggle for a
while before my accident, didn’t get any easier afterwards.
Finding the Path to Recovery
Due to issues of logistics and emotional trauma, Tracy wasn’t
there for much of my inpatient rehab. We lived two hours north
of SCVMC, and she worked Monday through Friday, so the
weekends were the only time she could come down to join in.
Once there, she struggled to participate in the rehab sessions,
admitting how hard this was, saying things like, “You used to
be able to do anything, everything, and now you can’t roll over
without help.”
It became that much harder when I told her that within
the first week of my injury I felt as if my body had told me I
wouldn’t walk again. Her response? “I can’t believe you’re giving up! We’re all counting on you walking out of the hospital,
40
NEW MOBILITY
and you’re giving up.” While for me that realization had allowed
me to focus on the step-by-step process of rehab toward healing
from my accident, for Tracy it obliterated all hope of recovery.
When I came home, we continued to wrestle with our responses to my paralysis. She was protective and scared for me
because she had so little exposure to the gains I had made in the
hospital, while I was ready to keep pushing my limits. When I
got home, I wanted to try walking our two big dogs, so I leashed
them up and wheeled out with them. Alone. As soon as we were
around the corner, they pulled me off the sidewalk and into a
hole in some deep grass. After about 10 minutes I figured out
how to get out of my predicament and get home. For Tracy, this
mishap was proof that things would continue to go wrong now
that I was home, while I saw it as a triumph. After all, I made it
back with the dogs, didn’t I? A few months after coming home,
at a local art and wine festival, she stormed off because I was
practicing wheelies. “What if you fall out of your chair?” she
seethed. “Someone will help me,” was my simple, but insensitive, response. We just never got comfortable with each other
after my SCI.
In early November 2003, I attended the Bay Area Abilities
Expo. At this point in my recovery, I was essentially on par with
my peers — driving on my own, done with outpatient rehab,
and back to work. On the first day of the Expo I met a couple
of members of the U.S. Women’s Paralympic Fencing Team
who were based out of Atlanta. They were at the event to do
wheelchair fencing demonstrations. We kept bumping into one
another, and over the next three days we struck up a real friendship. As accomplished as I thought I was, these women were at
the next level. They routinely traveled the world for competitions, which was impressive since I had yet to fly with my wheelchair. I was enthralled by their stories of mishaps and creative
solutions. More importantly, their attitudes impressed me; they
lived as if they could do anything. They seemed unstoppable,
and I wanted that for myself. Over dinner we agreed that my
first flight would be to Atlanta.
Tracy and I were still not in sync leading up to our second
Thanksgiving post-injury. Since the Expo I kept returning to
how uplifted and optimistic I felt with the Paralympians. It
was such a contrast to how hard I had to work at home to keep
positive about my recovery while trying to bring Tracy around
to my way of thinking about our lives post-injury. I was insistent that I could do everything for myself and she didn’t need
to worry, but she just couldn’t see the incremental steps I had
made as successes. We still didn’t have our old life back, and we
never would. So, the day before Thanksgiving, I asked Tracy for
a divorce. As difficult as that was, it arose from a faith that my
life did not have to be smaller just because of my injury.
Embracing Independence
and Growth
My first flight wasn’t to Atlanta. Instead I flew to New Jersey,
for my grandmother’s funeral. My dad and I traveled together
and successfully put to use all of the advice I’d solicited from
SCI peers on how to go through TSA, gate-checking my chair,
and boarding on an aisle chair. That experience was the perfect primer for flying alone in the future. Through 2004 and
2005 I did make that first journey, and several more, to Atlanta.
Over the course of many long weekends staying with my friend,
Carol, I learned how to live independently as a wheelchair user.
Learning to master his wheelchair showed Dalton he could master his SCI.
When I was there I inhabited her regular life. We spent time
outdoors or at the gym, we went grocery shopping and ran errands, entertained at her house or went to visit friends. It was an
effortless education in integrating life with a spinal cord injury
with plain old life.
About that time I was asked by my original SCVMC physical therapist, Darrell, to come into a class he was teaching
at a local medical college. He wanted to give the PT students
in his spinal cord injury module the chance to practice their
skills on real SCI clients rather than each other — “OK, now
pretend you can’t feel this.” ... Since the students would be doing muscle and sensation testing and I had not been in PT for
a while, I thought it would be a great opportunity to see how I
was progressing, and if anything had changed for me and my
injury, so I readily agreed.
On the day of the class, three other guys with SCIs and
I spent the afternoon with about 25 PT students. None of us
told them our level of injury or ASIA score; their job was to
figure those out using their diagnostic skills and watching us
move about on the mats or in our chairs. They swiped my skin
with Q-tips and safety pins or asked me to “resist as hard as
you can.” Towards the end of the class, the students put forth
their hypothesis of our injury levels and the four of us revealed
our diagnosed level of injury. The students were pretty close on
mine. Their results confirmed my suspicion that although I had
regained some sensation below my level of injury, there was no
real functional neurological change.
“Give it a year,” I had been told by another peer. And I shared
this with the students as we talked. I told them that although
there was little change for me in terms of my injury, there had
been tremendous change in terms of my ability. I became physically independent, responsible for all of my self-care, mobility,
and household chores. More importantly, I had become comfortable and confident in my skin as a wheeler. I had more of a
sense now of who I was than I ever had before in my life.
At dinner that evening, Darrell asked the four of us a question that clarified all that I’d been through in those initial
years. “If there was a pill that would completely cure you of
your injury, but the cost would be that everything you have
learned and experienced since your injury would be lost to you,
would you take it?” One of my companions blurted out, “Walking isn’t that important!” I found myself in agreement that the
cure would be a net loss.
When I decided to complete my long-neglected bachelor’s
degree in 2009, I learned that in the 1990s the field of psychology had coined a term for my companion’s enthusiastic response and my reluctance to return to my pre-injury life. Psychologists use the term “posttraumatic growth” to describe
what I went through. I came to value the unexpected rewards
of how I learned to live my life following my spinal cord injury. The research identifies five possible areas of growth: an
appreciation for life; a spiritual change; new ways of relating
to others; personal growth; and/or the realization of new possibilities for one’s life. In my own case, I can easily say three of
the five came about quickly because of the experiences I had
in recovery and the people around me who helped me figure
things out along the way.
Recently I’ve been watching a lot of films about ultra-endurance events. The Barkley Marathons: The Race That Eats Its
Young, Desert Runners, and Inspired to Ride all chronicle races
in which the competitors are pushed right up to, and often beyond, physical and mental failure. Lazarus Lake, the founder of
the Barkley, says towards the close of the film, “I think that people that go through this, they’re better for it. They’re not made of
better stuff than other people, but they’re better for what they’ve
asked of themselves.”
While I’m certainly no SCI oldtimer, I feel like I have enough
miles under my Kevlar-belted tires to suggest that Lazarus’
words in relation to his ultra-marathon are similar to what I
would say about myself.
J U LY 2 0 1 6
41
INNOVATIONS
New Wheel Technology
By Mark E. Smith
T
he cliché is, “There’s no need to
reinvent the wheel.” This has for
the most part held true for ultralight manual wheelchairs, where only a
few wheel innovations have dramatically
improved performance over the decades.
However, there are new wheel technologies that really have reinvented aspects
of the wheel — with notable benefits for
ultralight wheelchair users.
The Historical Issues with
Wheeled Propulsion
In recent decades, as technology and
social inclusion increased, ultralight
wheelchair use also increased. In the
process, the study of biomechanics in
manual wheelchair propulsion became
a field unto itself. Two primary findings emerged. First, ultralight manual
To use the Rowheel, you pull instead of push.
42
NEW MOBILITY
wheelchair propulsion in the long term
can be hard on the body, where the
traditional forward pushing motion has
a correlation to joint strain, especially
at the shoulders and wrists. Second,
because ultralight wheelchairs traditionally use stiff frames, without suspension, they can prove very jarring,
exacerbating such conditions as back
pain and muscle spasms. So, how are
new wheel technologies addressing
these two significant issues?
When Backward
Becomes Forward
Since the invention of the manual wheelchair, propulsion has been via a forward
push of the drive wheels. After all, if you
want to roll a wheel forward, you logically push it forward. This has been the
method of mobility for millions, for centuries. However, biomechanically speaking, this hasn’t ultimately proven to be
the best form. Primarily, only the triceps
are used, and tremendous strain is put on
the shoulder and wrist joints.
The engineers behind Rowheel,
manufacturers of an aftermarket ultralight wheelchair wheel that can be propelled forward with a pulling motion,
evolved a solution that dramatically
improves biomechanics. The Rowheel
uses sophisticated gearing within an
ultralight wheelchair wheel, so that
when you pull back on the handrim, the
wheelchair propels forward. To steer,
you counter-rotate the wheels, but in
opposite directions of standard wheels.
For braking, you press inward on the
handrims. I realize this all may sound a
bit counterintuitive, but once you try
Rowheels, you will understand a simple
Pulling instead of pushing on Rowheels could
prevent shoulder and wrist strain.
reality: they work extremely well.
The magic is in the “rowing” or pulling motion. Instead of using primarily
your triceps and straining shoulder and
wrist joints, the Rowheel keeps joints
stable and uses your biceps, deltoids,
traps, and lats — that is, approximately
four times more muscles than during a
forward push. The result is overall easier
propulsion, with less immediate fatigue
and better joint health over the years.
Additionally, the biomechanics of pulling versus pushing intrinsically improves
posture by allowing you to remain
upright, with your shoulders thrust back
during propulsion.
Beyond the biomechanics of
Rowheels, built-in gearing allows
approximately one-third farther propulsion per stroke. When you combine
the gearing with the biomechanics of
Rowheels, the result is dramatically
greater efficiency in propulsion.
Rowheels are available in wheel sizes
from 22 to 26 inches (in two-inch increments), and can be retrofitted to all
major brand ultralight wheelchairs.
Put a Little Padding in Your Push
Another unintended problem that has
developed with wheelchair wheels is
the general lack of shock absorption. If
you’ve spent any time on varied outdoor
terrain, you know that no matter how
high the quality of your ultralight manual
wheelchair, the ride can be rough at
best, teeth chattering at worst. For those
prone to pain or spasms, the rough ride
can exacerbate symptoms. Softwheel, a
revolutionary wheel design, ingeniously
addresses the need for shock absorption.
The Softwheel replaces traditional
spokes with three shock absorbers that
connect the hub to the rim. The wheel
functions as a normal push wheel until
it hits a bump. The shock-spokes then
compress, allowing the hub to travel
from the center of the wheel, where it
absorbs the bump, then returns to the
center. The secret to the Softwheel’s success is that it uses a totally rigid rim and
handrim, so there’s no flexing or energy
loss as you push. It’s only when the wheel
itself encounters an obstacle or bumpy
Seeing is Believing
There are three shock absorbers that connect the
Softwheel’s hub to its rim. They’re easy to install,
too — just plug and play.
surface that the wheel rim compresses
the shocks, enabling the hub to travel off
center for absorption.
With the Softwheel weighing only
3.5 pounds, you get the benefits of true
absorbing suspension without adding bulk to an ultralight wheelchair.
Available in 24-inch and 25-inch sizes, the
Softwheel is plug-and-play on most ultralight wheelchairs.
Both the Rowheel and Softwheel
technologies are so simple in use, yet
esoteric in design theory, that they’re
among those rare products where seeing is believing. Jump online and check
out the videos — seeing how they
work mechanically is fascinating. Also, if
there’s an annual Abilities Expo in your
area, that’s a great venue to test them
for yourself. After all, when it comes to
these mind-boggling technologies that
actually improve our lives as wheelers,
the one experience better than seeing
them, is trying them.
Beware, innovation comes at a steep
cost. Rowheels are listed at $5,400 online,
though different sites offered them for as
low as $3,495. The Softwheel ranges from
$2,650 to $2,990.
Resources
• Rowheel, www.rowheels.com;
608/268-9760
• Softwheel, softwheel.technology
REACH 2016
Renew
Explore
Advance
Connect
Hope
B ui ld a se ns e
y,
of co m m un it
w
ne
d is cove r
d
so lu ti o ns , an
ur
re new yo
p as si o n fo r
.
re ha b nu rs in g
Register at
rse.org
www.rehabnu
. 1, 2016
SEPT. 28–OCT , PA
IA
PHILADELPH
SEPTEMBER 4-7, 2016
OMNI NASHVILLE HOTEL AND MUSIC CITY CENTER
www.academyscipro.org
J U LY 2 0 1 6
43
RAISING A RUCKUS
Thirteen contestants, 13 weeks, one
finally named ‘America’s Wheelchair
Celebrity.’ Sounds exciting, no?
By Allen Rucker
Wheelchair Celebrity Boot Camp
T
he time’s they are a’changin’ …
but not in the direction of scruffy
ballads about peace and love. It’s
the brave new world of celebrities uber alles, and welcome to it. We
crossed the threshold between fame
and power with Ronald Reagan, and
now we have obliterated it. The trend
line is crystal clear — soon all public
servants, from president to county
auditor, will first be seen and celebrated in People before The CBS Evening
News. Not just Reagan, Al Franken,
Arnold the Governator, or this Trump
fellow. All of them: mayors, governors,
Supreme Court justices, the whole lot.
Deal with it.
Political parties will now hold casting sessions to see which celebrity has
the best chance of beating out another
celebrity from the other party for any
electable job. You’d begin the search
with the show business bible called “Q
Scores,” basically a popularity poll to
see who’s the most liked. For instance,
you wouldn’t ask Bill Cosby or Miley
Cyrus in to read for “U.S. Senator.” Their
Q Scores are at rock bottom. If you
were smart, you’d probably only make
one call — Tom Hanks. Is there a more
humble, decent, honorable-seeming
celeb in the world? Personally, I would
also like to see the duo of Tina Fey and
Amy Poehler in the running. They are as
likeable as all get-out, plus they could
good-cop-bad-cop poor Vladimir Putin.
You could fight this trend with honest, can-do political pros, but first, good
44
NEW MOBILITY
luck finding one, and second, you’d
still lose. If you want good people in
office, coax the celeb of your liking into
running, and if he or she isn’t available,
create your own!
Which leads me to the connection
between Celebrity America and wheelchair users like you and me. Unless you
count the right-bending governor of
Texas, there are no wheelchair-using
celebrities of national import out
there right now. If Christopher Reeve
were still with us, he would be kicking
Donald Trump’s keister all over CNN,
but it’s not to be. As a community, we
have to get pro-active and create our
own, brand-new celebrities. The means
for doing this is staring us right in our
flat-screen faces — reality television.
The show I have in mind is called
Wheelchair Celebrity Boot Camp. The
setting is a big TV studio where contestants, all wheelers, must live and
develop their God-given celebrity
potential over a season. If The Voice
can bring in “real” singers like Gwen
Stefani or Blake Shelton to coach wannabe stars, then Wheelchair Celebrity
Boot Camp (WCBC) can rope in “real”
reality stars like any Kardashian in the
phone book to teach the dark art of
becoming famous by doing absolutely
nothing! It’s a rarified skill set: how to
pose for the paparazzi — not wearing undergarments is a great start;
making the right kind of bimbo celeb
friends to lure TMZ into following you
around for no reason; and most of all,
just believing in your inner star-ness,
otherwise known as pathological
narcissism. Thirteen contestants, 13
weeks, one eliminated per week, one
finally named “America’s Wheelchair
Celebrity.” Sounds exciting, no?
Now that you can bill yourself as a
self-made celeb, beholden to no one
for your justifiable self-importance, you
quickly morph into a self-made politician who plays by no one’s rules but
their own. With your WCBC earnings,
dozens of product pitches for “winners!” and wall-to-wall free media coverage, your campaign will fund itself.
If you run into money problems, your
legions of fans will foot the bill.
Even if your opponent is Tom
Hanks, God forbid, and you lose —
hey, once a celebrity, always a celebrity. You write books, take a regular seat
on The View, and of course become a
wildly popular coach on Wheelchair
Celebrity Boot Camp.
Bottom line — the ultimate inclusion in America society is celebrity
inclusion, and this is but one way to
jumpstart it for wheelers. Maybe your
way is make it big as a hotelier, develop
a killer smirk, and marry great-looking
airheads. In America anyone, absolutely
anyone, can become famous, then
become famous for being famous, then
become a power broker.
Yakov Smirnoff said it best: “Whadda
country!”
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508-362-8545
Did Your
Address
Change
life beyond wheels
a publication of United Spinal Association
Like Us
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46
NEW MOBILITY
?
If so, please provide
New Mobility with
your updated
information so you
will not miss
a single issue.
Full Name, Street Address,
City, State & Zip Code are
needed for both the
old & the new address.
Please allow 6-8 weeks for
this change to be processed.
Please mail to:
120-34 Queens Boulevard, Suite 320
Kew Gardens, NY 11415
Or submit your request electronically to:
[email protected] or at
www.newmobility.com
Or call: 800-404-2898 x7203
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Accessible Journeys
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Call 800-404-2898, ext. 7253
or email your request to
[email protected]
Print Rates:
• $1.30 per word
• $1.00 per word
for USA Members
• Boxed Ads - $105 per inch
• Pre-Payment Required:
VISA, MasterCard,
AMEX, Discover
• All Paid Print Classifieds get a
1 month FREE Web Classified
Online Only Rate:
1 month = $16
3 months = $36
6 months = $72
9 months = $108
12 months = $144
Hollister Inc. is excited to launch the VaPro Plus
Pocket hydrophilic intermittent catheter. No need
to compromise protection for discretion. Learn
more: www.hollister.com/vapro
Wellspect HealthCare: LoFric® is a proud sponsor
of Life Rolls On’s “They Will Surf Again” events
nationwide: empowering adaptive athletes to
discover limitless possibilities beyond paralysis.
www.liferollson.org, www.wellspect.us 855/456-3742
Silver
FOR SALE
Nationwide Wheelchair Van Rentals. For
the next time you want to get out, vacation, doctors appointment, or try before
you buy. Learn more at www.BLVD.com
Allergan: The LLS (Lower Limb Spasticity)
Approval press release is at the link:
www.allergan.com/NEWS/News/ThomsonReuters/U-S-FDA-Approves-BOTOXonabotulinumtoxinA-for-the
Astellas Pharmaceuticals, www.astellas.us,
800/888-7704
Asterias Biotherapeutics: Previous OPC1 study demonstrates safety and cell engraftment. https://blog.
cirm.ca.gov/2016/05/25/more-good-news-from-cirmfunded-spinal-cord-injury-trial/
Supporters
Coloplast
Comfort Company
KD Smart Chair
EZ Lite Cruiser
Girards Law Firm
Michigan Auto Law
Surehands Lift & Care Systems
Synapse Biomedical
For more information on how you can support United Spinal
and become a business member, please contact Megan Lee
at [email protected] or 718/803-3782, ext. 7253.
Acknowledgements on our website, in New Mobility, in United
Spinal e-news or any other United Spinal publication should not
be considered as endorsements of any product or service.
newmobility.com/classifieds
J U LY 2 0 1 6
47
CRIP BUZZ
THE BEST OF DISABILITY BLOGS AND BANTER
SHOWING HOW YOU #LIVEBOLDLY
We tweeted:
@MeBeforeYou says we’re better off dead than disabled. That’s wrong. Share pics and show them how you #LiveBoldly.
And here’s what you shared:
SO … CAN YOU HAVE SEX?
Photo by Jamieson Dean
It’s the question every nondisabled person wants to know. Now,
when they bug you for an answer, send them to, “How People
With Disabilities Have Sex.” Published on Broadly, Vice.com’s
feminist channel this past September, it’s making the rounds
again and we shared it on our Facebook page on June 11.
Our fans got creative with their comments:
Featured in the article, Tim Rose and his wife founded the Rose
Centre for Love, Sex and Disability in 2011.
48
NEW MOBILITY
Darren Sheens: It’s usually in the top five questions, people are
curious creatures. My partner has a shirt that says on the front,
“NO, I’m not his carer,” and on the back, “Yes, we do have sex.”
Billy Lee Sharkey: Who asks that question? If asked, just say,
“Get naked, I’ll show ya.”
Mystie Brook: My sexual preference is often. (The sticker on
my wheelchair.)
Tony Hopstetter: I usually say, “once you go gimp, all others
are limp,” and that shuts them up.
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